Rarity Life Issue 4

Living your best LIFE

Rarity

HELLO EVERYONE!

Strength comes in many guises. Strength to accept your difference, to make a change or to cope with all that life throws at you. In this edition, we celebrate all the people we have met along this journey at Same but Different.

We hear from Sarah in our style feature about how she coped as a16 year old, being told she had to have her leg amputated if she wanted to live. Sarah Wynn, CEO of Unique, shares the difficulties she faced after multiple miscarriages and how she has used this experience in her support of families facing a rare disease diagnosis. Teenager Ella writes about her own challenges of facing cancer in a powerful and enlightening article. We are grateful to all our contributors and we hope there is something for everyone in this edition.

Ceridwen Hughes

Same but Different

MEET THE TEAM

Ilmarie Braun

Carl Edwards

Claire Li Andrew Pearson Katy Parry

Ceridwen Hughes

RARE TALES

Turning the tales of childhood on their head to reflect a rare interpretation. Renée has been diagnosed with Ehlers-Danlos Syndrome and never knows how she will feel from one day to the next. As a strong and confident young woman she realises the ‘wolf’ is not always as scary as she thinks!

Dress: Petite structured twill midi cami dress £95.20 www.coastfashion.com

All photographs by Ceridwen Hughes Assistant Claire Li , Carl Edwards & Theo Hughes Make up Catherine Kerwin-Rawlinson Location Soughton Hall, Sychdyn.

Beauty & the BEAST

Sarah had her leg amputated due to osteosarcoma at 16. She has learned to live with her disability and is confident and embracing life’s opportunities.

We all know social media can be cruel and in our interpretation the ‘Beast’ is social media.

Dress: Sequin cross front maxi dress £111.20 www.coastfashion.com

Once upon a time is NOW

Dress: Atsu bow maxi dress £198.00 www.anthropologie.com

Photographed by Ceridwen Hughes

A step into the unknown

Sarah Dransfield was just an ordinary teenager who was 16 and making plans when she started to experience pain in her leg. It was January 2012 and she had just returned from holiday with her family when she first noticed it start to hurt. She told her dad who suggested maybe it was a strain or she had 'sat funny'. She dismissed the pain but it continued to get worse.

Over a few months she started taking more and more painkillers in the hope it would improve but it just got worse. Eventually she made an appointment and went to the doctors, who suggested it was a pulled muscle. She was told to continue with the painkillers. Sarah visited a physiotherapist who also initially suggested it was due to a growth spurt but on a second visit he became more concerned as he noticed her leg had started to turn in. He was concerned enough to suggest she pay for a private MRI so that there was not a delay. The family talked it through as it was such an expensive test but it was decided that she should book the scan. After the scan they gave her a disk and told her to give it to her physio which she did and thought nothing more about it. The next day her mother got a call that changed their lives forever.

"The physio told mum that I had cancer which was so hard for her to hear. Her and my dad picked me up from college, which I remember as being strange. They did not tell me about the diagnosis at that point, they just said I needed to go to Huddersfield Royal Infirmary for another X-ray. At this point they were distraught but kept it hidden from me."

"We went into see the doctors where they told me they had confirmed I had cancer. All I remember is being really upset and them passing me loads of tissues. The doctor didn't actually have the answers because it's quite a rare cancer that I had. Initially they hoped they might be able to remove just the cancerous sections of the bone but there was always this fear they might need to amputate. It was so much to take in not just the fact I had cancer but might actually lose my leg too."

Following the diagnosis the family faced an anxious wait before going to a specialist hospital, in Birmingham, for a biopsy which diagnosed osteosarcoma. For anyone getting that diagnosis it is hard, however, Sarah was only 16 years old and as such she did not know anyone else with cancer. The family really struggled with the diagnosis particularly when they discovered the treatment was extremely intensive.

www.samebutdifferentcic.org.uk

Image courtesy of Sarah Dransfield

"I woke up after my amputation, and I really just didn't want to look at my leg. It was strange because I went down to surgery kicking and screaming and yet when I woke up I felt like a different person. The tumour had been taking away so many nutrients and I just felt so much better once it had gone. I remember thinking ‘I'm here, I am still alive.’ It was only two days until I was up on crutches and able to leave hospital."

Initially the thought of losing her hair was a real challenge for Sarah and it was the thing that upset her the most in the early days of treatment. Everything moved quite quickly from that point. "I had a port fitted. It went down over my collarbone and down to my heart. It was a really awful regime which meant being in hospital for five days, going home for two days then coming back in. It was really tough and I was very scared."

Being on a teenage cancer ward was of great help to Sarah. Initially seeing others of a similar age undergoing treatment was difficult but she soon appreciated the shared experience. Her mum stayed with her but she still felt isolated. It was a long way for friends to travel and at that time it was before social media was used as widely as it is now, and so it was hard to maintain contact. Sadly despite the treatment she was told she needed to have an amputation. Initially she fought against this advice but came to realise it was her only option if they were going to save her life.

Sarah had one day at home and then had to resume her chemotherapy. She had been through a life changing surgery but had to continue with an exhausting treatment regime so she did not have much time to process it all. She had to relearn how to walk and it really affected her confidence. Initially she tried to hide her leg and would wear long trousers to disguise it.

"I didn't want people to know. I was quite ashamed, which is

For more information www.lauracranetrust.org www.limbpower.com

awful. It took me a couple of years to feel happy in my skin. I went to an event in about 2015 and met other amputees which really helped me change my attitude. I met and made some really great friends there who understand what I am going through. I can get some bad sores off the prosthetic and they understand and we support each other."

Sarah had chemotherapy for nearly a year in total because after her amputation she was told some of the cancer had spread to her lungs, which required her to undertake another operation, this time to remove the cancer from her lungs. Following treatment, she had regular check ups and as time has gone by, her fear has changed from being scared about it reoccurring to concerns over the damage done by the treatment.

The uncertainty is scary but then having cancer has also made me live my life to the full. Five years ago I went on a TV program called Blind Dates and met my boyfriend Phil. We are still together and have bought a campervan so we can travel and have more adventures. I like to think I am an advocate for disability. I have learned to love life and aim to make the most of every day.

Image courtesy of Sarah Dransfield

Osteosarcoma is the most common type of bone cancer, which mostly affects children and young adults under 20.

It tends to grow in long bones such as the femur. It causes pain in the bone, which may be worse at night. A lump or swelling may form."

www.samebutdifferentcic.org.uk

Sarah Dransfield

Photographed by Ceridwen Hughes

Unique ly Supported

Jack has Duchenne Muscular Dystrophy photographed by Ceridwen Hughes for the Beauty of rare exhibition.

Sarah Wynn always knew she wanted to be a scientist, and throughout her life, her decisions have been made with this at heart.

Following a-levels she started her impressive academic journey academic jouney with a BSc in cellular and molecular pathology, a PhD in Philiosophy in Genetics, a MSc in Medical Genetics whilst living in Hong Kong and more recently she has completed a second master’s degree in genetic and genomic counselling. Her work as a researcher is both reflected and intertwined with her academic life, leading over the years to a move away from cellular biology and cancer, via chromosomes to developmental biology and genetics.

"I moved into developmental biology, looking at the genes that are switched on early in development and how they impact the developing embryo (because) I think when you’re a geneticist, it almost doesn’t matter which gene you look at because you’re trying to find out the same thing; what does that gene do? How does it work? What’s the impact when it is switched off or doesn’t work properly?"

Sarah’s work within the field of academic research was one she loved, was passionate about and committed to. She explained

“I really loved working in the lab for many reasons, there’s some magic about it, knowing that you’re the only person in the world looking at that particular thing. When you find something out, you’re the first person to know that, and that’s really exciting!”

After the birth of her second child, despite loving her job and the research she was doing she realised that she would struggle to work full time.

“Being an academic is very demanding timewise, and it’s also very inflexible because your experiments don’t ever quite go according to a nice timetable. Your cells grow at a slightly odd rate so it would mean I’d have to go and feed my cells at the weekend and it was just really difficult familywise.”

Sarah did not feel that she could be open within her workplace or with her colleagues about the realities of the juggling she had to do to manage her work, her family and her home life. So although her professional life was going from strength to strength, ultimately she felt she had no real choice but to look for a role that would offer her more flexibility. A decision made all too often by women at the height of their promising careers. In 2019, a study found that nearly 40% of women leave STEM (science, technology, engineering and maths) jobs after starting their families.*

Women account for less than 30% of all researchers in the world, but often their loss to the world of research is the gain of the nonprofit sector, something which is especially evident in the rare disease community.

Unique provides information, support and networking to families affected by rare chromosome and gene disorders. They support people to understand what a diagnosis means, and connect them to others within their communities. Their mission is simple; to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability/developmental delay and to raise public awareness.

*1 Study finds more than 4 in 10 women leave STEM jobs after having their first child - Bizwomen (bizjournals.com)

www.samebutdifferentcic.org.uk

"I always wanted to be a scientist from the moment I remember wanting to be anything, I really loved maths and the sciences at school. I had that sort of young, over-optimism that I wanted to cure cancer, I loved the idea that science made these amazing breakthroughs."

Sarah recalls that they were looking for somebody with clinical experience, and her background was in the lab. It was also a fulltime job but she still applied, having decided that she would need to change her career to be able to have a better work-life balance, and was offered the job as a job share. This move also helped address the disconnect she had sometimes experienced as a researcher; "It’s really important that research happens, but you’re really far away from patients. So I really wanted to do something a bit more tangible, a bit more patient-focused, so the role with Unique was a really good opportunity to use my genetics background, but in a more tangible, direct way."

In the early years of their marriage, Sarah and Marc were living and working in Hong Kong, both enjoying busy and successful careers. Unfortunately, when they tried to begin their family Sarah experienced the difficult loss of having three miscarriages. Losing 3 or more pregnancies in a row is known as ‘recurrent miscarriages’, and will generally prompt the start of several investigations, one of which is to test both partners’ chromosomes. Marc was found to have a balanced translocation between chromosomes 5 and 7, which can cause fertility issues. Simply put when the chromosomes separate to form egg or sperm cells a balanced translocation can lead to an ‘unbalanced translocation’ if they separate in a particular way, resulting in an increased risk of miscarriage/s.

"At the time that we joined Unique (as members) we hadn’t had a successful pregnancy and we’d found out that Marc had this balanced translocation. As coincidence happens I’m a geneticist, so when we got the results it seemed completely crazy that I got them over the

phone while I was in the lab. My obstetrician gave them to me and said ‘I’ve got no idea what this means, but they found this,’ and of course, I knew what it meant."

Miscarriages are experienced in 1 of 8 known pregnancies, and yet they are often not talked about. There are perhaps many different reasons for this; from intensely personal, to social, religious and cultural. The silence around miscarriages can lead to feelings of isolation so Sarah has always chosen to speak openly about her experiences. Whilst talking will not change the difficulties of the loss being faced, it can help those dealing with them to feel seen, supported, and less alone. How an individual woman will deal with their miscarriage will be personal to them, and their experiences, but again in being open about our feelings we can help normalise the huge breadth of emotions that people might face. For Sarah having a reason for their miscarriages was helpful and gave her hope.

"The diagnosis was actually good news in some ways, which feels like a strange thing to say. I was anxious about the fact that we’d had all these miscarriages, that maybe once you’d had three you were just going to keep on having them. Having an explanation for why it happened was helpful for us as a couple. I think it super helpful that actually, it was Marc rather than me because I would have felt guilty about it. Whereas actually, Marc was much more rational about it, he was very much able to say ‘I didn’t do anything to cause this, it’s not my fault, it’s just one of those things."

"W hile I was on maternity leave the Unique magazine came through the letterbox, and in the magazine was a flyer for a job advert for Unique

Image courtesy of Sarah Wynn

Feelings of shame, of responsibility, and of being at fault are a complicated part of the experience of miscarriage for many women. Even for Sarah, who from an early age had dreamt only of being a scientist, whose studies and work had all required the ability to be clinical, scientific and rational, those fears and feelings were there. Until Marc’s diagnosis, she had felt like perhaps it was her fault, "you feel completely responsible for not being able to hold on to this pregnancy, and maybe it’s not rational, because it’s not your fault, but it felt like a huge weight of responsibility." For Sarah and Marc having a reason for their fertility issues helped them to move forwards, to understand, to feel less alone and

Complicated feelings of isolation, loss, guilt or responsibility are often also experienced in the rare disease world and form a key consideration for Sarah and the team at Unique in the planning and provision of the support and services they offer to the community. Unique started as a parent-led support group in 1984 and was set up by Edna Knight MBE along with four other families as the Trisomy 9 Support Group. As with many parent-led organisations Edna sought to provide the support her family needed whilst dealing with their rare disease diagnosis. In 1993 the group was granted charity status and the Unique logo was adopted, its first funded role was filled by Beverly Searle who went on to lead the charity as Chief Executive Officer until her retirement in August 2021. Before joining Unique Beverly was a research biologist with an interest in biochemistry and genetics, but as with so many within the rare disease world when her daughter Jenny was born with a chromosome deletion Beverly’s life was changed forever. Sarah’s life too was changed by Marc’s diagnosis with a rare chromosome disorder.

By 2007 Sarah had moved back to the UK, begun her family and joined Unique as an employee, looking back now she reflects that in those early years at Unique. "We all had a link to the rare disease world that had brought us there."

“I completely understood why they had happened, it was a biological thing, but for me, it was the total loss of hope I found really much harder to deal with.”

Image courtesy of Sarah Wynn

Image courtesy of Unique

Over the years she has worked in different roles within Unique and had also had periods where having left Unique she returned to research and education within the field of genetics. When Beverly announced her aim to retire by August 2021 Sarah was just finishing her master’s degree in genetic and genomic counselling, which she had begun to enable her to be better equipped to help support the Unique families, and so she felt it the right time to apply for the CEO role. She is passionate about continuing and developing the core work that Unique do to support those affected by rare chromosome and gene disorders. Unique offers support and information in different ways, recognising that people will need to access both in their own way and at the time that works for them. A key part of their offer is the information they provide in the form of guides, which are written to be medically accurate, family-friendly and easy to understand information that gives a really accurate picture of what it’s like to have a child with that condition.

"With the advances in research, and in testing more and more families are getting a diagnosis for their children but then they’re just left, dangling alone. They don’t know where to go for support, and they don’t know what it means. I think that next step is almost completely missing in the patient pathway."

A diagnosis is important, but it’s really only the first step on a journey for a family. For Sarah what comes next is just as important, and she is committed to furthering the role that Unique can play in offering ongoing support, and becoming a trusted and accessible source of information in the diagnostic pathway that patients and families go through. "We quite often fill that gap where families have been given a diagnosis, but no real information. When they google they find us and get in touch. I think one of the things that have got better over the last few years is that clinicians do recognize the importance of giving out good quality information, and there is more acknowledgement that written information that families can take away is important. So often our guides are given out in clinics."

Unique has worked hard to build these vital relationships with the medical establishment, to become that important link that can meet the psychosocial needs of families in a way clinical settings can’t.

"Although we serve the families we realized that we need the clinicians because we need them to diagnose our families. We need them to look after our families, and we also need them to tell our families where they can go for support."

Once Unique has become involved the level of support accessed will be decided by the families themselves, from simply downloading an information guide through to calling the helpline, joining a support group or peer support from other families with a shared diagnosis. Above all Unique want to make sure that at the point of diagnosis a family knows that they are not alone, that there is a community, no matter how small, how rare, or how unique, but there is a community out there.

"Someone who understands, who can offer support and a picture of what it’s like to have a child with that condition. That they’re real children, and it’s not just this clinical diagnosis. To see that this is how is how other families have managed day to day."

A balanced or chromosomal translocation, also known as a reciprocal translocation, is a condition in which part of a chromosome (molecule of genetic material) has broken off and reattached in another location. In short, it means that sections of two chromosomes have swapped places. Translocations can be completely harmless or they can cause serious health problems, depending on the chromosomes involved. For example, if certain chromosomes are affected this can result in frequent miscarriages or other fertility issues.

To find out more about Unique visit www.rarechromo.org

www.samebutdifferentcic.org.uk

Each year many hundreds of babies are born with rare chromosome and gene disorders. These are lifelong conditions, present at birth though often not inherited, caused by parts of one or more of their chromosomes missing, added on or rearranged, as well as changes in single genes.

To learn more about the charity, please visit www.rarechromo.org

Although rare, collectively the disorders are much more common, affecting as many as 1 in 100. Their individual rarity, however means that doctors and other professionals often have little knowledge about them, leaving parents and carers feeling distressed, isolated and confused. This is where Unique comes in, answering their many questions and giving them the help they need. Unique’s services include a ’Listening Ear’ telephone and email help service – the first point of contact for parents, doctors and other professionals. We have published a library of over 300 medically-verified information guides to specific conditions and run events such as family days, workshops and study weekends for parents and professionals to learn more about these conditions. Unique also runs a family matching service linking families living with similar conditions and/or symptoms for mutual support.

New technology means lots more chromosome and gene disorders are being discovered all the time. More families than ever are receiving diagnoses and demand for Unique’s services is increasing very rapidly. We now support over 11,000 UK families, part of a global network of almost 30,000 individuals with rare chromosome and gene disorders.

1 in every 200 babies in the UK is born with a chromosome or gene disorder.

“A caring voice in difficult times”

What we’re INTO

BOOK REVIEW

HOW TO LIVE WHEN YOU COULD BE DEAD

by Deborah James

Vermilion, £14.99, pp240

It is profoundly moving to read a book knowing that the author has so recently passed away from the cancer that she has spent the last five years learning to not only live with, but to do so with determination, honesty, grace and a whole lot of humour.

In 2016 Deborah James was given a devastating diagnosis that she not only had bowel cancer, but that it was incurable. Her happy, busy and fulfilling life juggling a young family alongside her successful and demanding job as a high school teacher came crashing down around her, leaving her lost, bereft and without meaningful purpose.

In starting her Bowelbabe blog James found a new, and wholly unexpected way to give her life meaning and purpose; “from the blog, things just kind of escalated and new opportunities presented themselves.” James became a household name, bringing a much needed conversation about the realities of living with cancer to the public domain in a way we’d not really seen before. In this book James explores the ways in which we can all, through reframing the way in which we think about things, change the way we respond to life’s challenges, because “every single thing that happens to you has a lesson in it if you’re willing to look for it.” Whilst many of the ways in which she learnt to cope with her illness are not unfamiliar, they are so much more powerful and life affirming within these pages because it is evident that James truly not only learnt how to cope with her illness, but that she learnt how to thrive and succeed despite it.

A beautiful, uplifting and above all hopeful book. Available from all good booksellers, £3 will be donated to the Bowelbabe Fund from each book sold in the UK. How to Live When You Could Be Dead (penguin.co.uk)

www.samebutdifferentcic.org.uk

What we’re INTO

PODCAST REVIEW

YOU, ME AND THE BIG C: PUTTING THE CAN IN CANCER

This is brilliant BBC podcast series was launched in 2018, hosted by three former or current cancer patients; Deborah James, Lauren Mahon and Rachel Bland. In September 2018 Rachel shared that she did not have long left to live, and after her death her widower Steve began to occasionally co-host episodes along with Deborah and Lauren. The series has now reached 90 episodes, the final episode was released on the 6th July 2022 as the remaining hosts and the producers gathered together to remember and celebrate the life of Deborah who had died in June, shortly after she had been honoured with a Damehood by Prince William in her parent’s garden.

It is testament to the hugely engaging way that the original hosts dealt with the main subject matter, their shared cancer experiences, that the show became the success that it is. In choosing to talk so openly, honestly and often with humour they helped to begin to normalise the conversations we all need to have around cancer. The hosts wanted to create a space that felt relaxed, and their chatty, accessible and emotionally honest style meant that they did just that, and even in the more emotionally raw episodes the feeling that you are sharing a conversation with friends is still there, making the difficult subject matter easier to carry.

With so many brilliant episodes to choose from there is something there for everyone, we highly recommend a listen. Because cancer is something we should all be able to talk about, to understand, to share. This podcast is a brilliant example of how we can begin to have those difficult conversations.

You, Me and the Big C: Putting the can in cancer on Apple Podcasts

PERFORMING ARTS REVIEW

CIRCUS STARR THE CIRCUS WITH A PURPOSE

Circus Starr - because every child deserves a little bit of magic! The central mission behind the utterly fabulous Circus Starr is simple, to bring the fun, the excitement and the beauty of the circus to families who might otherwise find it difficult to share this experience.

Circus Starr “creates a magical world, harnessing the power of the circus and invites families with all kinds of different needs to have fun together in a safe, welcoming and unique atmosphere.” The team at Circus Starr believe in a world where anything is possible, and have seen first-hand how positive experiencing a fun-filled family trip to the circus can be for families. Using their insight and understanding they have created a ‘tut-free’ space, in recognition that attending mainstream events can be difficult or even impossible for children with additional needs or families in difficult circumstances.

At Circus Starr ‘shouting out, dancing and jumping up and down are expected’, leaving all children (and adults!) free to be themselves, to absorb and enjoy the circus experience in their own way.

How to visit:

Circus Starr puts on three tours in the UK every year, typically visiting 74 communities over the course of the year where they perform two shows before moving on. Their website lists the towns and cities on the tour, so visit using the link below to find your nearest venue.

Tickets are free – yes free! Tickets are distributed in two main ways; the bulk are sent to children and their families through local networks of hospices, schools, hospitals, regional branches of national charities and support groups however families can also apply direct to Circus Starr.

www.samebutdifferentcic.org.uk

Starr | (circus-starr.org.uk)

Circus

Photo: Mark J Jones Photography markjjonesphotography.co.uk

One in three, and me

Reflections on cancer by Ella Sinden

It was after she sailed with ‘A Chacun Son Cap’ (a French charity for children with cancer and leukaemia) in 2000 that Dame Ellen MacArthur was inspired to set up her own charity to support children living with cancer. Initially the Ellen MacArthur Cancer Trust was set up to support young people aged 8–18, but in 2010 it was extended to support young people aged 18–24 for the first time.

The team at the Ellen MacArthur Cancer Trust understand that dealing with cancer can have a huge impact on a young person’s mental wellbeing. Through sailing and outdoor adventure they aim to help young people build confidence by making friends with others who have had similar experiences, to rediscover their independence, to begin to realise what they are capable of again and crucially to stop feeling like the ‘only one’. To find out more about their incredible work visit their website.

Believe in a brighter future (ellenmacarthurcancertrust.org)

Photograph: Marcus Woodbridge, Unsplash.

When I was first asked to write this, I was thinking about a witty, cynical piece that would change the world’s perspective of the big C word, something I would be endlessly praised for and boast my success to all future interviewers. But that’s not what it is. I am witty but I’m also stubborn and impatient and I tell myself I’m unaffected when I most likely am. Athough this is not my sob story, it is a story, and I want to tell it to you, for my sake and possibly yours. Take notes.

Personally, I struggled to stay in the world of cancer, and I felt selfish when I didn’t run a marathon in budgie smugglers in the snow, or donate my time or my money or my left lung to anyone, those people will forever have my undying respect. But then I was asked to do this. I’m not a heroic survivor of cancer, and I struggled with the universal you’re so brave language initiated by any mention of a drip, but, if one person can relate to this, that’s enough - I will tell myself I helped you.

Let’s cover the basics - in May 2020 I was diagnosed with stage 1 ½ ovarian cancer (they never really confirmed so I took a guess), and a tumour was removed along with my right ovary in the same month. But this cancer had a strong growth mindset and so in July that same year I started a 4 cycle chemotherapy programme, and I was excited. People forget to mention that part, the buzz of trying something terrifying - so maybe it’s just me. But there is something about going through a rare, life altering event that triggers the little voice in your head to say “I wonder how people will react when I tell them” - awful no? I felt awful, but incredibly human, to say the least. I wanted a ‘The fault in our stars moment’, where I’d be forever changed by my experience, maybe meet an

angsty teen boy and bond over our shared trauma - I’d like to think I was very disillusioned by Hollywood’s fantasification of it all. It was hard, very hard, and painful, and debilitating, but, even if only slightly, also uplifting.

I label myself an introvert, because then it means I can rewatch Game of Thrones for the 7th time alone in my room and blame it on my nature, but in reality I don’t think anyone is entirely intro or extroverted. When you go through something like this you start to recognise yourself, what you need and what you should allow yourself and so now I want to highlight my first piece of advice to my inpatient crew - be selfish. Be as ungrateful and bitter and short tempered as you can possibly manage, if you so wish it. You need to allow yourself to cope, you have a reason, use it. Develop the worst diet of your life, binge all 10 seasons of friends even if it makes you and everyone else cringe, do not make a move in over 12 hours and have someone attend to the remote. Equally, get up in the morning, stretch, open a window, read, write, scream the lyrics to some depressing generic, repetitive song that resonates with your pain. It is not anyone’s place but yours to enforce or ignore productivity, or define what it is.

www.samebutdifferentcic.org.uk

Image courtesy of Martin Allen Photography

People disassociate from cancer, it's easy, I would, and I did. No one ever thinks of themselves as part of the 1 in 3 statistic, and no one ever prepares for being the 1. But no one in the history of anyone ever dreamt that the entire world would be ill with you, and it definitely turned things up a notch. Kicking off the new decade with a global pandemic impacted everything - I don’t need to tell you, and for cancer patients it put the sole in isolation.

On the one hand, everyone is inside, feeling just as depressed as you are and establishing newfound mental illnesses, which I suppose meant the world had actually stopped spinning without me, but personally I needed people, I needed my family, and when you’re permitted one visitation per day and the occasional unnerving eye contact with a masked stranger as they change your

deprived …huh?? It’s not supposed to happen, and the last thing I ever expected was to be the 1 in 3. I remember being in my back garden in the dark after my first inpatient cycle, kicking a deflated football into the wall and screaming ‘why me’ - maybe a little dramatic on reflection. But for the first time, I had absolutely no control over what was happening to me, and in my narcissist angsting ways, I was astounded. I wasn’t about to refuse the lifesaving treatment being provided for me - “er apologies, but not for me thanks”. When I look back I think this is why I struggled with “you're so brave” as a statement. I was far from brave, I was just…being. Whilst everything happened around me, I was coping, or rather, being dragged kicking and screaming back to the teenage ward in Bristol every 3 weeks.

fluids, things become surreal, and yet I’m only now beginning to understand just how surreal it was. Being a teenager with cancer sucks, you’re old enough to remember every agonising moment and young enough that your brain is still developing, so you have no idea what’s going on or who you are or why you wept to ‘soldier comes home and reunites with dog’ on TikTok at 3am - or why you were even up at 3am. It’s a confusing time, and when someone chucks a rare and aggressive breed of cancer your way, your initial response is a slightly delayed and sleep-

give me a shout if you relate, that being 2 years into remission, everything’s hitting me now, like someone’s made a bat out of suppressed anger and stress and is just beating me over the head with it. Somehow this seems to be the hardest part for me, and it's funny because everyone else seemed to be aware of this stage except me, and when I’m tired or anxious or fizzy, like someone’s shaken me and I’m just bubbling, it's ah yes - peak time to be readdressing your hospitalisation 20 months ago - pardon?? When was this decided? Am I hitting a deadline here? It feels incredibly

unfair, that I now have to think about it all and process - but it's true. There is a time in remission when it comes back, in vague, subtle ways, or all at once - like bursts of nausea or anxiety or feeling fizzy, and this is important to acknowledge, but never feel any pressure to address, this is your brain doing its thing. I went on the Ellen McArthur Cancer Trust sailing trip this summer (something I wholly recommend), and I remember asking someone about pressure. About the fact that I need to feel experienced now, how my perspective needs to have changed for the better and now every thought should be brilliantly analysed and understood and I should just; know myself. Inside and out, all the time. Being a control freak and perfectionist, this came from me, but it also came from my experience, and the fact that I needed to be in control now because I hadn’t been.

There is no pressure to be different or changed, or suddenly understand the meaning of life. I suppose this is one drawn out way of saying ‘go with the flow’.

So this is a brief summary, just so I can say that I’ve processed it. I feel like I’ve covered everything, but I know that I’ve only just about made a dent, and I don’t like that I’ll have to continue dealing with these emotions, or that I have to watch people battling their curiosity and look like they’re being strangled when I tell them what I went through. But I’m managing, and for people who are in remission, it’s a process, a process that waits for no one and continues long after treatment ends. But think of it like this, you are now immediately infinitely more interesting than the average person, and hopefully now, you are suddenly capable of a whole lot more.

...like someone’s made a bat out of suppressed anger and stress...

www.samebutdifferentcic.org.uk

Germ cell tumours

Germ cell tumours only develop in germ cells, which are the cells in the body that develop into sperm and eggs. Typically germ cell tumours develop in the ovary or testicles as this is where our bodies have the most germ. Sometimes germ cell tumours can develop elsewhere in the body but these are very rare.

The main treatments for germ cell tumours are surgery and chemotherapy. Treatment will depend on the type of germ cell tumour and where it is in the body.

Image courtesy of Ella Sinden

Precious moments

All too often rare disease or medical journeys can be hard, but even in the hardest weeks there are precious moments to be had. An unexpected smile from a loved one who is struggling, the smile that tells you that they’ve got this. An impromptu cuddle in the middle of a busy day. Seeing those you love share their own special moment. It is moments like these that can sustain us through those harder times.

Alex Braun

“When a physiotherapy session turns into an im promptu cosy cuddle whilst exploring what a stubbly face feels like”

Image courtesy of Alex Braun

Claire Bradshaw >

“If smile could be my middle name, well Mummy would have it cemented in stone, Kaycee Smiler Bradshaw”

<

Amy Towers

“This was taken the day we left hospital and got the all clear on Harry’s heart after a lot of worry he had a heart abnormality. He even got an Easter Egg for being such a good patient”

< Kim Gadsby

“Siblings, a brother and sister, love speaks a thousand words! Cuddles we never thought we would get”

www.samebutdifferentcic.org.uk

Image courtesy of Kim Gadsby

Image courtesy of Claire Bradshaw

Image courtesy of Amy Towers

Celebrate your way

Illustration for Rarity Life by Annie Dewhurst

Reflections on learning how to celebrate special occasions Article contributed by Annie Dewhurst

It took a while for us to find out what worked when it comes to tackling special occasions, because they can be a little overwhelming for our poppet –lots of noise, people, change of routine, change of environment, the list goes on.

It’s been a learning curve, that’s for sure. Sometimes things have gone surprisingly well. Other times not so. But that’s life, isn’t it? It’s not all plain sailing.

Sometimes other people’s expectations of our kids (or us as parents) can be unrealistically high.

Routines change, visitors may come and go. It can be an overload of the senses. Sometimes our poppets don’t react as we or others anticipate. Sometimes too many presents and new things are simply too much. Sometimes, the day or event is a washout for various reasons, ones we couldn’t plan for.

Sometimes we can’t visit others. Sometimes we can’t stay. Sometimes we don’t even get invited. Sometimes we may get an unannounced visit. Sometimes people stay too long. Sometimes we can’t be with the people we love. Sometimes we have to cancel last minute. Sometimes things happen and we’re late. Sometimes our poppets want to retreat. Sometimes I want to retreat, I’m not really a social butterfly these days!

That’s a whole plethora of sometimes, isn’t it? That can put huge extra, and unnecessary, pressure on children, young people and families like ours. There’ve been times when I’ve felt my child and I are very much alone…and that’s in a room full of people. There have been times when I’ve felt we’ve been invited as we’d be a novelty. There are times when we’ve sat in a corner, just watching the event unfold in the distance. Happy to be there, saddened we can’t be involved, or not included, then relieved to go home. There have been times where we’ve been genuinely welcomed and accepted by complete strangers. No novelty attached. Sad to go home.

Sometimes occasions have been fabulous. Sometimes cringeworthy. Sometimes not being invited has hurt, deeply. Sometimes not being invited has been a HUGE relief. Sometimes being invited hasn’t been great… again, lots of sometimes.

www.samebutdifferentcic.org.uk

Hannah:

Hannah was diagnosed with Cornelia de Lange Syndrome whilst still a baby. CdLS affects between 1 in 10,000 to 30,000 live births and is present at birth. Individuals may display physical, intellectual and behavioural characteristics. However, it can be widely variable and not all people with the condition will show all of the aspects.

For more information visit www.cdlsworld.org which can signpost to the different Foundations.\If based in the UK you can find out more at www.cdls.org.uk.

The first International consensus statementtreatment and diagnosis protocol is linked here: https://www.cdls.org.uk/ treatment-guidelines/

We’ve learned who’s inclusive, who’s not, what suits our girl, what suits us, what to avoid, what to try again.

For any family starting out on their own rare journey and new to venturing out into the world of celebrations (or staying in for that matter), I’d say we’re all gloriously unique; ergo what suits one person or family, may not suit another.

Over the years I’ve learned. Lots. These days, being quite a few years into our rare journey, I’ve learned trying to please everyone outside our little unit doesn’t always work. If it doesn’t feel right, then it doesn’t happen. No pressure.

I’ve learned to say “thanks, but no thanks”. I’ve also learned to say (if I genuinely mean it) “thanks, but no thanks, but please keep inviting us”. Furthermore, I’ve learned to make a sharp exit when necessary. I’ve also learned it’s okay not to invite everyone that other people expect you to invite. I refused to be a people pleaser long ago! I’ve learned less is best.

I’ve learned sometimes a trial run is in order. So, perhaps, if a special outfit is required, we’ll do a trial run – being extremely mindful of removing any substances (food, juice, crayons etc) within a 10 mile radius that could stain a fancy frock. And I’ve also learned that it’s quite possible I may not always return home in clean attire myself.

Because you know; sticky paws (my child), food or drinks thrown (my child), rolling around on a floor trying to change a child’s pad (me and my child), and reflux (child) might just all make me a little mucky too.

Gift giving is now spread out… over hours or days. I’ve learned my child quickly loses interest in a present covered with wrapping paper that doesn’t rip, or stuck with a thousand miles of sticky tape. I’ve learned its always best for others to ask what’s suitable when buying a present. So, say, for a child (mine) who likes to eat play-doh, it isn’t a particularly good idea to buy said child play-doh, is it? I’ve learned it’s okay not to always come up with a suggestion for a gift when someone (kindly) asks what my child might like or need.

I’ve learned that packing (and remembering everything) to go out for an event can be a total, but necessary, drag and feel like you’re packing for a fortnights holiday. I’ve also learned not to forget anything!

Over the years I’ve also learned that sometimes less is more.

I’ve learned that it’s absolutely fabulous to go on holiday and escape the additional, unnecessary (sometimes) pressures of Christmas.

I’ve learned that staying home can be lovelier than going out, that it’s okay to stay home and not adhere to others’ expectations. I’ve learned if they don’t understand, then they’re not your people.

It’s all been trial and error, really.

Who’d have thought special occasions could be a learning curve? But they have.

I’ve learned that we will never have a typical children’s party because my girl has no friends. I’m absolutely okay with that, because she’s absolutely okay with it.

I’ve learned to go with the flow and sometimes lower expectations – if things don’t go to plan, then they don’t go to plan. It’s not the end of the world.

Whether glorious, memorable, exhausting, annoying, cringeworthy, dreadful or whatever, celebrations have certainly taught me a great deal.

If you’re just starting out on your rare journey, take none of this as advice from me. Do what feels okay for you and your family. Do try things though. If they don’t work, and they’re not right, then it’s a learning curve. Things may be okay another time. Whatever the celebration, I truly hope you all have the loveliest of times.

What I do advise though is, take photos, cherish those memories.

Annie:

Annie writes a brilliant blog on Facebook, which is full of her candid and often humorous insights to their world. You can find her by searching for ‘My kid loves broccoli.’

She has also written, and co-written, books, we’ve included the details below:

Cornelia de Lange Syndrome – A Shared Journey: https://www.amazon.co.uk/ Cornelia-Lange-Syn drome-Shared-Journey/dp/ B09MYTK86Z/ref=tmm_pap_ swatch_0?_encoding=UTF8& qid=1639848104&sr=8-1

The (little) Book of Broccoli: https://www.amazon. co.uk/Little-Book-BroccoliDoodles-Journey-ebook/dp/ B092TMFD87

Illustration for Rarity Life by Annie Dewhurst

Iceland holiday guide

Iceland is known as the country of Fire and Ice, and it’s not hard to figure out why with its geography including both glaciers and an active volcano. Iceland is also a country of extremes and opposite; from its rugged landscape to its modern cities, including the cosmopolitan capital city Reykjavik. Reykjavik is an ideal base from which to explore the country, and whether you visit for a short break or take a longer trip you’ll find there is a lot to enjoy.

There are some great companies that can help you plan an unforgettable trip, including Iceland Unlimited who specialise in accessible travel in Iceland. It is well worth the visit, a deserving tick on anyone’s bucket list, including ours here at Rarity Life!

Photograph by Jeff Sheldon, Unsplash

MUST SEE

The Golden Circle in Iceland is a tour taking in three of the country’s natural wonders. Thingvellir National Park is a stunningly beautiful UNESCO World Heritage Site, where in 930 Iceland’s first Althing (Parliament) was founded. Geysir Hot Springs are next on the tour and will not disappoint, providing unforgettable eruptions every 4-8 minutes. Finally, Gullfoss Waterfall is one of Iceland’s most iconic waterfalls, also known as the golden waterfall and is quite simply not to be missed!

THINGS TO DO

A visit to the beautiful, modern Hallgrímskirkja church is a must on a trip to Iceland. This striking concrete building sits beautifully within its surroundings in Reykjavik, its clever design pays homage to the breathtaking rugged landscape and the volcanic flows in Iceland. It is free to enter although access to the tower is paid entry - but is worth the lift ride up for some truly stunning panoramic views.

THE BLUE LAGOON

One of Iceland’s top places to visit is the Blue Lagoon, a geothermal spa in the lava fields which boasts warm mineral-rich waters. The waters have been proven to have health benefits, as well as offering a relaxing and enjoyable experience! The Blue Lagoon also has restaurants, a spa and accommodation, and with the option of a day visit or a longer stay, it is a flexible place to visit. Accessibility is taken care of with specially designed wheelchairs that access the warm waters.

THE NORTHERN LIGHTS

A great time to see the Northern Lights in Iceland is from late autumn to early spring. There is a reason that seeing the incredible natural phenomenon of the Aurora Borealis is on so many bucket lists! In order to make the trip one to truly remember the conditions need to be right, so booking onto a tour to take you away from light pollution with a local guide will maximise your chances of experiencing natures light show.

www.samebutdifferentcic.org.uk

Photograph by Tenna Morgan, Unsplash

WHERE TO EAT

As an island nation, it’s no surprise that a lot of the restaurants in Iceland all serve up fish alongside other traditional dishes such as smoked Icelandic lamb or “hangikjot" as it is known. Of course, as well as their delicious national and traditional menus many restaurants offer a range of foods, from vegan to Indian to Michelin starred places there is something for everyone. Most places do get busy so always try to book ahead, especially for evening meals.

MATARKJALLARINN - FOODCELLAR

The Food Cellar is one of the top restaurants in Reykjavik, based in a 160-year-old building you will enjoy not only the food but the setting! The restaurant is open for lunch and dinner. From taster menus to à la carte menus the staff can help you pair your meal with the best wines. The restaurant also has an amazing array of cocktails that will not leave you disappointed. Book in advance to enjoy the atmosphere and top-class food.

HLEMMUR MATHOLL

Hlemmur Matholl is not a restaurant, but a busy bustling food hall housing many tasty places to grab a bite to eat. It really is a must-try foodie heaven that is lively and has a great ambience, that makes this one of Reykjavik’s best places to fill up with. Each trader has its own great reviews so you will be spoilt for choice. Open daily from 10 am to 11 pm, you can’t go wrong with a trip here!

ISLENSKI BARINN - THE ICELANDIC BAR

An authentic Icelandic bar serving up tasty food and a full range of Icelandic beers and spirits. The food ranges from traditional Icelandic fare to the more usual chips and burgers. This place is not a touristy establishment, with locals frequently enjoying the relaxed atmosphere and the welcoming and friendly staff. Islenski Barinn should not be missed.

Photography © Islenski Barinn

Photography © Matarkjallarinn

WH ERE TO STAY THE REYKJAVIK EDITION

This 5 star luxury hotel is based in the heart of the scenic historical district, close to many of the main attractions and the historic waterfront. The hotel boasts panoramic views of the harbour, Mount Esja and Snæfellsjökull glacier. Offering comfort, luxury and a perfect location, this hotel is one of the best. The attentive staff will make your stay here memorable.

HOTEL BORG

Iceland’s first luxury hotel, opened in 1930, is certainly a hotel to remember. Full of Art Deco charm this stylish hotel’s esteemed neighbours include the Icelandic parliament and Reykjavik cathedral. Located overlooking Reykjavik’s pretty Austurvöllur Square and within walking distance to many of the city’s main attractions, it’s an ideal base for any travellers wanting luxury.

RADISSON BLU 1919

Ideally situated in the centre of the city the landmark Radisson Blu 1919 building offers guests both comfort and luxury. With two onsite restaurants and an enviable position, it is definitely one to consider.

www.samebutdifferentcic.org.uk

Photography © Hotel Borg

Photography © Reykjavik Edition

Photographed by Ceridwen Hughes

Wrexham's best signing

"My name is Kerry Evans, and I am the Disability Liaison Officer at Wrexham Football Club. It's a very positive role."

As a child Kerry was severely bullied at school. Being a redhead didn't help and having a limp as well meant she was an easy target. She tried to not let her disability stop her doing anything though. She had a pony and did horse riding right up until the age of 18.

"I had very mild cerebral palsy down my right side, from when I was born, went to mainstream school, was able to walk, got married, had a daughter. It was a very, very mild disability. If I got tired, I might trip sometimes, but apart from that it wasn't even noticeable."

"When I was 30, just out of the blue, on a Saturday night I collapsed in our kitchen. I hadn’t even felt unwell. I was taken into hospital, they very quickly found out that an area that had already been damaged at birth had now ruptured. I had a cerebral bleed on the brain. I was told I probably would never walk again."

"It impacts the whole of my right side, so I am deaf in that ear and all my internal organs on that side are affected. People see me doing my job and sitting here, looking healthy and doing interviews and things and assume it's just the fact that I

can't walk, but it isn't. It affects my lungs, bladder, bowel, kidneys, basically all my internal organs. It has taken a lot to get used to it."

"Because people assume it is just based around my walking, it is really difficult when I am having a bad day. I don’t necessarily want to go into all the details with them but it can be hard."

The uncertainty of her condition was one of the main reasons Kerry took time to decide if she wanted to take on a full-time role at Wrexham AFC. For 5 years she had been volunteering and it had become very much full time. She started at 9 am and would work until teatime every day. I loved doing it, but when Ryan Reynolds and Rob McElhenney first came over in October and asked me if I would do the role as an employee, it took me until March to make my decision. People kept saying ‘but you are already doing it’.

Kerry worried that the added pressure of being in a paid role would be a problem because of the added challenges she faced with such an uncertain medical condition. In the end though she took that leap of faith.

"It's what gets me up in the morning. I am lucky that I do a job I absolutely love."

Kerry had supported Wrexham AFC for a long time as her family had been huge fans and they never used to miss a home game. Her husband also became involved as a volunteer on the Calon radio show on a Friday which he ran for the club for 7 years. Gradually Kerry became more and more involved which led to her doing the voluntary role and now as an employee.

Kerry said that she is a much happier adult than she was as a child, due to her experiences of being bullied at school. She feels that her childhood experiences and disability have made her a nicer, more empathetic person. Her situation has also impacted her family, for example, her daughter is now a neonatal special care baby nurse. Kerry believes the fact she was a young carer has shaped her career choice. She has learned to appreciate life, to not take things for granted and to want to help and make a difference.

The knowledge and understanding of what it feels like to be disabled allows Kerry to have an important insight for her role at Wrexham AFC.

"For people to come to a match and forget about all the difficulties they face is so important. To do that they need an accessible stand and it is what has shaped many of the initiatives.

When I started we initially took it slowly and did things like provide blankets and ponchos to those on the front row that get cold and wet. We then thought about how we could make away games accessible. It was really important to me that every fan, regardless of disability, should be able to go to an away game and enjoy their day."

The logistics of providing mini buses for away games were a challenge because of the costs involved but Kerry did not let that deter her. She set about fundraising and finding sponsorship. It is because of her tenacity that the ‘Fun bus’ service has been running for several years now.

Wheelchair users are not the only people to experience accessibility difficulties. Recognising that there are a wide range of disabilities and accessibility is at times also an issue has led to other initiatives which include autism friendly areas. She worked closely with Kerry Roberts from the National Autistic Society when designing the offering.

Photograph: Imari Carmen Del Valle Cámara, Unsplash.

"We have implemented quiet walkabout sessions where we invite people to come and see the quiet zone and the sensory hub. We have a double doorway entrance which means you don’t need to go through the turnstiles, if it causes difficulties. Staffing rotas have also been reviewed so that we have the same stewards at the matches ensuring there is always a familiar face. In addition to ear defenders we have also bought weighted teddies and weighted blankets to provide comfort. There is a whole host of things implemented to make the experience positive."

Kerry takes such an interest in the fans and their needs that she is often able to offer a bespoke solution to meet their needs wherever possible. The passion she feels for the role shows through the breadth of initiatives. She does not work in isolation as it is important to the club as a whole. When they recently became a Makaton friendly club, even some of the players took time to learn.

A hugely popular initiative has been powerchair football. The club now has 21 powerchairs ensuring that it is accessible to even those with the most complex disabilities. It is open to anyone who has a disability and whilst you might not use a powerchair in your daily life, it is used to participate in the sport.

"Our Friday night sessions really are making a real difference in people’s lives. Not only is it a sport, it has an important social element. They now have sponsored kit to wear and they were so excited to wear it. Some of the people who come along used to feel really isolated and it is so much more than just a sport to them. It is also important for their families and carers as it is an opportunity to meet others in a similar situation."

"I think everyone's good at something. You've just got to find out what your thing is. I never ever thought that being in a football club would be my thing. But it definitely is. It is such a privilege to be doing what I'm doing."

Image courtesy of Kerry Evans

Changing Stereotypes Through Film

and Art

In conversation with Dagmar Bennet

Dagmar Bennet is a sculptor and creative living in London. Having moved from Wales to study figurative sculpture her interest in inclusion and equality was piqued when she came across British actor Adam Pearson who has neurofibromatosis. Seeing the work he was doing as a disability advocate and his aim of raising awareness was something she found inspirational. She reached out to Adam, and asked if she could produce a hyper realistic bust of him for her final college project, their friendship blossomed from there.

"I saw that Adam had been doing a lot of work on the telly, I literally just reached out to him on Twitter saying I want to do a project with you, I want to do this sculpture of you. We met up and Adam was very specific, and only wanted to work with people who are passionate about the cause. I ended up working quite closely with him for a year, getting to know him, we spent a lot of time together and we formed a really strong relationship."

A lot of Dagmar’s work centres on breaking down barriers within society, and challenging how people view others who might be different to them.

"I think I saw him as a little bit of a muse because he was doing a lot, trying to change how people think. He was very much an advocate and I got inspired by his work."

Currently, she is working in equality, diversity and inclusion for Brixton Finishing School, and helping underrepresented talent get into the creative industries. Dagmar is passionate about giving people a voice and helping them to achieve their potential within society.

Image courtesy of Dagmar Bennet

Neurofibromatoses is the umbrella term for a group of three genetic conditions; (Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2) and Schwannomatosis).

The condition causes tumours to grow on nerve endings, the tumors in NF are generally non-cancerous and their location, and other associated issues, depend on the type of NF.

For more information visit: Nerve Tumours UK | Home | Nerve Tumours UK https://www.nervetumours.org.uk

For more information on Dagmar’s workplace head to the Briston Finishing School website: Free Online and In-person Courses | Brixton Finishing School https://brixtonfinishingschool.org/

To find out more about Dagmar and her work you can visit her web page here: https://www.gofundme.com/f/differencefilm?member=21422329&utm_campaign=p_cp+sharesheet&utm_medium=copy_link_all&utm_source=customer

Image courtesy of Dagmar Bennet

The latest project Dagmar is working on is a short fashion documentary film, also featuring Adam, called Difference. The aim of the project is to keep raising awareness and to challenge society’s views, breaking down barriers for people with disfigurements. "At the moment, I’m currently fundraising for it with a Kickstarter page. I have got an amazing producer involved, who does fashion and creative work on music videos. It will be very theatrical. We’re in the very early stages but looking to film it next spring. It’s going to be filmed in London and the location that we’re using was the largest prefab estate in the UK. So essentially, it was built after World War Two to house people who’d been bombed and lost their homes. The actual location stands for a lot within British history, as it is a bit of a symbol of community and how we can come together and help each other."

Using a mix of high street and high-end British fashion is the film’s goal, highlighting that encouraging diversity within fashion campaigns does work, and hopefully making the industry think more about who they might use for future campaigns. Opening up conversations and dialogue in society as a whole is an important part of her work for Dagmar, and her upcoming projects will build upon this as she feels that there is a long way to go to try achieve inclusion for all, especially within the fashion world.

For Dagmar understanding the difficulties that underrepresented communities can face within society also comes from personal insight. "My uncle’s disabled and my mum cares for him and I think a lot of people don’t really understand the kind of barriers that people with disabilities might face. This could also be said of gender or race and the barriers there. So for example, if you’ve got facial disfigurement, it could be really difficult to get a job. It could be really difficult to get housing just because others might perceive you in a certain light. So there are a lot of barriers that other people don’t really realise that they go through."

Ultimately Dagmar wants to break down stereotypes that are still prevalant in today’s society, fighting for more equality and making things a lot more equal within society and especially in the creative industries.

www.samebutdifferentcic.org.uk

Image courtesy of Dagmar Bennet

Winter Wonders ways to appreciate

the winter

Get up early on a bright frosty morning and take a gentle walk. Inhale the cold fresh air and exhale with every other step and enjoy the stillness and quiet.

Watch an early winter sunset from your favourite spot and take in the beauty of the light and the changes it makes to everything around you.

Go to a local garden centre food shop or farmers market and get everything you need to make a wholesome winter-warming meal to enjoy with your friends or family.

Light your firepit or chiminea or start a mini bonfire, wrap up in blankets and enjoy the chilly evening with your favourite people, hot chocolates and campfire snacks.

Find an old baking recipe to try at home like cinnamon shortbreads, enjoy the smells from the oven as your tasty treats bake. Enjoy one warm and appreciate the moment.

On the first frosty, chilly day, put on your favourite hat and scarf and get out into to nature and capture the splendour around you on camera, flashes of colour, different textures or patterns left by frost on leaves, enjoy the beauty.

Brew your favourite coffee or tea, wrap yourself up, and take a good book out to the garden.

If you wake up to a truly cold day go outside and create some beautiful ice art, using things you’ve collected and set them out in water to freeze outdoors to produce stunning frozen ice blocks.

www.samebutdifferentcic.org.uk

On a brisk clear night wrap up warm and head out to star gaze, nd possibly see one of the winter Meteor Showers. There are lots of great apps that help identify the different stars you might see.

Go foraging through some woods

for wintery materials like pinecones, twigs and foliage to make some perfect decorations for Christmas or create a centrepiece for your table.

Enjoy a glass of mulled wine or mulled cider while making something to decorate your home that will make you smile over winter.

Wrap up and head out to your favourite bookshop or library. Find a new book to spend some time getting lost in it on a cold and wet day, taking comfort from the warm peaceful surroundings.

Pack a flask of homemade soup and head off to a scenic spot for a warming winter picnic with the people you love spending time with.

Buy a crackling-scented candle and let it be your company on a cold night at home and enjoy the mood you have created.

Visit your local coffee shop, order something Christmassy-flavoured, and take a drive to spend time in your favourite outdoor space.

Buy your favourite sweets from childhood, snuggle up with your family or friends and enjoy a film from your younger days for a heart-warming nostalgic evening.

Try a new slow-cooker soup recipe to enjoy on a very chilly night with some comforting fresh bread from a local bakery, or bake your own!

Collect the most perfect stone you can find and spend a few hours creating rock art to leave somewhere on your next walk.

Head off to a local farm or garden centre and take inspiration home for your winter garden, from new winter flowers and shrubs to new foods and drinks, there will be plenty to inspire you.

Remember that every season including winter is short, so take in every moment, because even when it’s cold and damp you can find something beautiful to enjoy before the spring awakens the earth once more.

All photographs by Ceridwen Hughes

A life shaped by CVS

Cyclical vomiting syndrome (CVS) is a very rare condition that causes repeated and severe episodes of vomiting, nausea and exhaustion. Episodes can vary from lasting for a few hours to several days, sometimes requiring hospitalisation. Julia shares her experiences of living with CVS. Having Cyclic Vomiting Syndrome CVS has really shaped my life, or my whole life has shaped itself around having it.

I’ve had CVS almost my entire life and it really takes an emotional toll over time! I’ve had teachers, professors, bosses, coworkers, and even people I thought were my friends accuse me of lying, of making excuses, or think that I’m just not putting in the effort to show up when I’m genuinely bedridden, because an episode can hit me one day, but the next day I’ll be completely fine.

Living with Cyclical Vomiting Syndrome contibuted by Julia Busse Diaz

Almost anything can trigger an episode, the list seems endless: disruption to my sleep schedule, menstrual periods, motion sickness, stress and anxiety, catching a cold or the flu, certain foods or drastic changes to diet, physical exhaustion, getting too excited about an upcoming event (like a vacation) and even the changes in seasons.

With the number of triggers that can agitate it, it really isn’t a shock that one of the biggest symptoms for those living with CVS is depression. When anything and everything can trigger an episode it can be hard to have a positive view on life, as it affects everything from making long term goals to even just holding down a job.

A lot of my youth before my diagnosis was spent questioning myself, “what if I really am faking it? What if it really is all in my head?”, but unfortunately CVS is a real thing which was a tougher hurdle for me to cross than it should have been.

I started having Cyclic Vomiting Syndrome CVS episodes when I was about three years old, but we didn’t have a name for it for almost ten years after I first started showing symptoms. To be honest, growing up as a kid with an overactive imagination at one point I thought I was being haunted by a ghost and that was what was possibly making me sick randomly, but that's of course is not how it actually works.

It started off subtly, I would have an episode every 3 months, then as I got older it turned into every other month. Now I get an episode every month, but never at regular enough times to be consistent! Before I was finally diagnosed every doctor I’d seen assumed I was just one of those kids that managed to catch every stomach bug that came around, or that I was straight up just pretending to get out of school.

CVS is not fully understood, and to date there is not a confirmed known cause and there are no standard diagnostic pathways. CVS may improve as a child gets older, but it can also affect adults. The condition can be debilitating, but it can be possible to manage it to an extent with lifestyle changes and medicines.

For more information see the below websites:

Cyclical vomiting syndrome - NHS www nhs uk

Cyclic Vomiting Syndrome NORD (National Organization for Rare Disorders

rarediseases org

’ve accepted that it simply is just a part of who I am and I shouldn’t let it stop me from living the life I want to live, even if living with CVS comes with some restrictions.

I

Image courtesy of Julia Busse Diaz

For a while even my parents assumed I was pretending as after an episode I’d seem fine by late afternoon, but this was because as a child I was able to recover and rebound more quickly. Even when I was taken seriously by doctors they would just explain to me what a migraine is, and I would reiterate back to them that it never felt the same as a migraine. I was diagnosed by complete accident by an endocrinologist who I was seeing for a seemingly unrelated issue at the time, but which later ended up playing a large role in my specific case, a hormone imbalance at the age of thirteen. Frankly I don’t think I would have ever been diagnosed, or at least not for a very long time, had it not been for this fortuitous occurrence.

As an adult the recovery from one CVS episode is getting harder as the years progress. It’s not easy waking up and immediately being hit with nausea and light sensitivity first thing in the morning, and then throwing up and retching intermittently every other hour for hours on end, maybe even drinking some water just to have something to vomit. It takes me at least a day after an episode to be able to hold down regular food now, and two days after an episode to more or less fully recover from the dehydration, fatigue, and sometimes even depressive episodes that can happen after an episode. This makes the future more uncertain than it already was, as it has drastically affected my ability to even hold down a job.

If I have a stressful job I get an increase in CVS episodes, which leads in turn to work absences, that then results in me either quitting because I feel guilty for being sick, or I get fired for having too many absences. Sometimes it can feel like a never ending cycle of feeling guilty for missing work, missing events with friends and family but also having very little control over it.

Trying to stay positive is one of the toughest battles with having CVS, because there is so much that is still unknown in terms of how it will affect the rest of my adult life ahead of me, and so little research on the long term effects on people past childhood.

I grew up being told that I would outgrow it, but when you’re young that can feel like eternity, or maybe even almost an impossible goal to ascertain.

But now that I’m here in my mid-twenties I’ve accepted that it simply is just a part of who I am and I shouldn’t let it stop me from living the life I want to live, even if living with CVS comes with some restrictions. All I can do is hope for the best and keep hold of the support I’ve built around me over the years. Staying positive while living with CVS is something that I have to actively make the choice to do every day, even if it doesn’t affect me every day. Maybe one day there will be more research, and the development of a better treatment plan!

But more importantly, I want more people to be able to get the right diagnosis, and spreading awareness in my opinion is the best way for this. Even if I never see more research being done in my lifetime, I still try to hold onto the hope that others one day might have it a little easier.

Although CVS is rare there are some good charities both in the UK and worldwide providing support. For more information in the UK visit the Cyclical Vomiting Syndrome Association: CVSA | cvsa uk –Charity Number: 1045723

The American Cyclical Vomiting Syndrome Association website is also well worth a visit, information shared includes a list of international CVS support groups (under resources).

You can find them here:

CVSA – Hope Starts Here (cvsaonline.org)

How To Survive Winter

There are those of us who absolutely love the autumn and winter months, and those of us that just don’t feel quite the same! Of course the colder months bring with them issues that many of us will recognise, from the onset of nasty winter bugs through to the realities of low mood that can often be associated with Seasonal affective disorder (SAD). However for those living with rare diseases, disabilities or cancer there can be so many more challenges to contend with, including of course the cold itself.

If someone suggested you go and sit on a park bench in the middle of winter for a few hours you’d soon notice the feeling of the cold damp air creeping into your bones, despite perhaps being wrapped up in a warm coat, with a fluffy woolly hat on. For those who use a wheelchair to mobilise this is just one of the challenges that winter brings with it, let alone navigating safely over soggy piles of leaves, or down icy roads. Less obvious perhaps is the way in which colder weather can effect cancer patients and survivors. Not only do those going through chemotherapy tend to feel the cold more acutely, many who have chemo induced peripheral neuropathy experience a worsening of symptoms like nerve pain, numbness, or muscle fatigue in cold weather.

Unless an imminent move to warmer climes is on the cards then winter is indeed coming, so we have created a handy winter survival for you. Hopefully one or two of our top five tips might just help make the coming months a little less wintery for you.

Get Outside

There are absolutely days when we all look outside the window and think ‘I’m not going out in that’, but if you can dress warmly enough, with the right protective outer layers then it is always worth braving the cold. Even if you are only outside for a short while the health benefits can be huge. Countless research studies have proved that fresh air, daylight and sunshine - if there is any to be found, will positively impact on all areas of our physical health and mental and emotional well-being. There is nothing quite like coming back inside with rosy cheeks and settling back down with a cup of something warm knowing that you don’t have to go out again!

Layers, layers, layers

‘You can only get wet once’ might be a reassuring mantra for hardy outdoor types but for most of us, the trick is to avoid getting wet, or damp, or cold - and the key to keeping dry and warm whilst outside no matter the weather is layers. For many people keeping their core warm will ensure that they feel warm enough whilst outside, but for those with reduced or limited mobility our extremities do tend to suffer more and so it is important to try keep them warm and protected from the elements.

Starting with a good quality thermal layer is key, and if possible it is best to buy one good quality item over a multipack of cheaper ones. A base layer of knee high thermal socks, tights or long johns and a long sleeved vest provide a great starting point! Generally natural fibres work really well, so adding layers of loose cotton or wool items really helps, think soft cosy jumpers and lined joggers. Again it’s worth investing in a good pair of gloves, and a long duvet style coat if budgets allow, fortunately these don’t tend to change vastly in terms of style so one good quality coat should last you for many years to come. For those of us who use chairs to mobilise, extra tips include to wear long lined boots with ‘Hothand toe warmers’ slipped inside (other brand are available). And of course a fleece lined waterproof cover instead of a blanket will help hugely.

A final top tip, and one used by cold weather athletes is barrier creams, as these can help protect your skin and lips from cracking.

Keep moving

Movement may well look very different for each of us, but trying to move in the ways that work best for you is so important. Even small amounts of regular movement or exercise provide us with multiple benefits, from improved physical health through to an overall boost to your wellbeing. Moving when it’s cold is even more important because it can help your heart, lungs, and circulatory system work better, as the heart needs to work harder to distribute blood through the body when it is cold.

Many people assume that good health means a fit and healthy body, but it is really important that those living with rare diseases, disabilities and cancer accept that health and good health is actually relative for each of us. For our communities a better description for good or improved health might be the ability to perform daily tasks and live as comfortably as possible in one’s body. In choosing the best ways that we can incorporate a level of daily activity and movement into our lives we can all try work on our own improved health and wellbeing.

Eat well

We often tend to associate the winter months as months in which we crave warming, comforting foods. Months in which it is okay to hibernate, to settle in for the winter with steaming mugs of hot chocolate and some delicious treats. Indeed, you may have noticed that you always feel hungrier during the colder months, and there is a biological reason for this, as the processes involved in digesting our food serves to raise our core body temperature which makes us feel warmer. Add to this the excesses of Christmas and it is no surprise that many of us routinely eat more in the colder months, and then struggle with any resulting weight gain. So in the colder months it is important to not only eat more, but to eat well! Think a healthy warming mug of soup midafternoon perhaps instead of an indulgent creamy hot chocolate. But allow yourself those treats too at times!

Make plans

This tip is especially important for those of us who struggle with seasonal affective disorder, who find that their mood and energy levels are noticeably lower in the longer, darker and colder winter months. But if you can, try to make plans, maybe a weekly plan to see a friend for a walk and a catch up, or a special trip to the cinema or theatre, or even a break away somewhere. It can be hard to do when you’re feeling low but venturing out in the world is important, so making plans to look forward to or creating and sticking to a regular routine can be very helpful. Planning trips, social events and activities that make you feel happy, connected to others and bring you a sense of achievement can help to boost your mood. So if you like knitting in front of a fire maybe try find a knit and natter group to join, if you love walking why not try a Nordic walking group. Plan for your winter, and it will help you cope until spring returns.

www.samebutdifferentcic.org.uk

It can be hard knowing what to buy a loved one at times, but harder still to find those perfect gifts for loved ones with learning difficulties, sensory impairments or other additional needs. Unfortunately, all too often any products created for those with special needs in mind come with rather special prices. With Christmas fast approaching we asked our wonderful rare community for their best, affordable buys, we hope you find one or two gift ideas below that prove to be perfect for your loved ones.

5 Questions with

Katy Parry

Katy is a Rare Navigator for Same but Different. Her role is to support individuals and families who have had a rare disease diagnosis. She helps them navigate that often complex journey, whether it is by liaising with health, social services or just being a listening ear.

Photographed by Ceridwen Hughes

Please share a little background about your rare journey with us?

In 2013 when my son Ewan was 5 years old and my daughter Niamh was just about to turn 3, Ewan was diagnosed with a rare type of brain tumour, PNET Medulloblastoma stage 4. Originally, he just had a turn in his eye so I took him to the opticians. He had images taken of the back of his eye, as usual, but from those they requested that we went to the hospital to be seen the following day. We went along to that appointment, at which they booked an MRI ‘just to check’. The MRI confirmed that there was a mass and that it had been causing the pressure that was seen in the images at the opticians.

Safe to say, make sure you get your children’s eyes tested regularly, as they can diagnose so much through the eyes. We were sent straight to Alder Hey Children’s Hospital for specialist care and a biopsy and unfortunately it was malignant. Sadly, after a lengthy and difficult battle with many issues with treatment, Ewan passed away at the age of just 7. He was incredibly brave and along with his sister Niamh, continues to be the reason that I do what I do.

What do you do for yourself?

I love to spend time with my family, going on walks with our 2 dogs. I am also a bit of a ‘bargainaholic’ so love to go for a mooch in the shops, including charity shops. I suppose it is a way to disconnect from the day to day. I love to turn my hand to different crafts, so have a house full of bits and bobs. My most recent hobby is paddle boarding which I have taken up over the last few years. I absolutely love being in the middle of a lake paddling around, the pure freedom is just all consuming. If it is something that you are wondering if you would enjoy and you are able to, definitely give it a go.

What drives you?

After losing my son I went straight into work. I tried working in residential care, and also worked as a 1-1, both working with children with additional needs. I felt that something was missing and often discussed this with my counsellor. I felt that I needed to use my experience of the issues that we had faced as a family, and that I needed to use those skills to support other people through their journeys. Knowing what it feels like to be stretched in every direction, feeling helpless and being all consumed by the road ahead, I hope that my input with the families that we support can offer some relief from their difficulties.

In your role you offer real, practical support. What other advice can you share with those on their own rare journeys?

Be gentle to yourself. The journey that you are on is relentless and although it may calm from time to time, it is always good to be able to protect yourself from the next wave crashing. Enjoy the calm in amongst the storm. I mean that, really enjoy it. Make memories and take loads of photos. Keep all of those daft pictures and dried out playdoh crafts. You will one day look back on those items and feel the joy of that moment. And possibly the most important, live like no one else is watching. If you want to have your Christmas decorations up in November, do it. If you want to go and get fuel dressed as an elf or the queen from Alice and wonderland, do it. Tomorrow is promised to no one, so enjoy the time you have with those you love and cherish.

What do you most enjoy about your Rare Navigator role?

Helping people in their time of need. There really is no other way of putting it. Sharing the skills I have to ease someone else’s struggles.

If you or your loved one lives in North Wales you can access the Rare Navigator service by visiting www.samebutdifferentcic.org.uk/support-services

www.samebutdifferentcic.org.uk

Rare Disease Uk Is The National Campaign

Rare Disease UK, run by the charity Genetic Alliance UK, provides a united voice for the rare disease community by capturing the experiences of people affected by rare conditions and working with our supporters to raise the profile of rare conditions across the UK.

We seek to bring about lasting change for better health and

Rare Disease UK is focussed on ensuring the new UK Rare Diseases Framework is as successful as possible, and that people and families affected by rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment.

We coordinate Rare Disease Day in the UK. We have lots of ways you can get involved in celebrating and supporting Rare Disease Day on 28 February 2023. Share your story, photos, take part in a social media takeover, be a press volunteer here to find out how you can get involved.

Find out more

UNIQUELY SUPPORTED www.rarechromo.org

CELEBRATE YOUR WAY www.cdls.org.uk www.cdlsworld.org

WHAT WE’RE INTO www.bbc.co.uk/programmes/ p0608649/episodes/player www.circus-starr.org.uk www.markjjonesphotography.co.uk www.penguin.co.uk

ONE IN THREE www.ellenmacarthurcancertrust.org

FASHION

Supported by:

www.anthropologie.com www.coastfashion.com www.ehlers-danlos.org www.sarcoma.org.uk www.soughtonhall.co.uk

A LIFE SHAPED BY CVS www.cvsa.org.uk www.cvsaonline.org

A STEP INTO THE UNKNOWN www.lauracranetrust.org www.limbpower.com

ARTS & CULTURE www.nervetumours.org.uk

CHRISTMAS GIFT GUIDE www.Argos.co.uk www.glow.co.uk www.sensorydirect.com www.smythstoys.com www.snoozzzy.co.uk www.specialneedstoys.com www.snoozzzy.co.uk www.toystreet.co.uk

WREXHAM'S BEST SIGNING www.cerebralpalsy.org.uk www.wrexhamafc.co.uk

5 QUESTIONS WITH…… KATY PARRY www.samebutdifferentcic.org.uk www.facebook.com/groups/rarechatuk

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