Rarity Mag | 07 | April May June

Rarity.

Includess

FEATURE

OVERCOMING ADVERSITY ONE IRONMAN AT A TIME

BUSINESS

DISSECTING CONSENT RARE-VOLUTIONARY WHY BEING AUTHENTIC HAS MORE VALUE THAN BEING UNIQUE

RESEARCH THE SOUTH AFRICAN COVID-19 SURGICAL OUTCOMES STUDY

SHARE YOUR COLOURS

WELCOME TO OUR COLOURFUL ISSUE DEDICATED TO THE CELEBRATIONS OF #SHAREYOURCOLOUR RARE DISEASE DAY AND ALL OUR SPECIAL ACTIVISTS, WARRIORS AND SUPPORTERS THAT MAKE OUR COMMUNITY SHINE BRIGHT.

Issue Seven

ON THE COVER

Share your colours

Cover photo credit JS One Photography

DESIGN AND LAYOUT

jane doe.

The Team

EDITOR IN CHIEF

Missy Hayes

CONTRIBUTORS

Dr Helen Malherbe

Marianne Gomes

Missy Hayes

Nomsa Mtshali

Kelly du Plessis

Natasha Nass

ADVERTISING

Missy Hayes

INSTAGRAM

TWITTER FACEBOOK LINKEDIN

YOUTUBE PINTEREST TELEGRAM PODCAST

editor@rarediseases.co.za

research@rarediseases.co.za

genetics@rarediseases.co.za events@rarediseases.co.za

hello@rarediseases.co.za info@rarediseases.co.za design@rarediseases.co.za

editor@rarediseases.co.za

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RarediseasesSA

rarediseasesSA

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Rare Diseases South Africa

RareDiseasesSA

Rare Diseases South Africa

Rare Diseases South Africa

External Contributors

Komeshni Patrick

Tricia Jones

Tanya Van Rees

Vivian de Klerk

Editor's Notes

And just like that we’re already heading into the second quarter of 2023. They do say time flies when you’re having fun and the RDSA team has had the most fun! We started the year off with the boldest, brightest pop of colour celebrating our incredible Rare community for Rare Disease Day. We loved seeing everyone #ShareYourColours and get involved with us.

Before I go off on a tangent about all the wonderful articles in our latest issue, I want to thank you for taking the time to read Rarity. So much work and love (and sometimes tears) go into our little magazine but knowing that you’ve taken the time to read it makes it so worth it. We appreciate you!

This issue is filled with a wealth of knowledge from information on the POPI Act to books that grow into plants. No matter your interests or area of expertise, there is something in this issue for you. We’ll be showing you the best, budget-friendly spots around our country because why travel to one spot when you can travel to many?! Plus so much more so get paging!

Last, but certainly not least, I would like to dedicate this issue to the athletes affiliated with South African Transplant Sport Association. Athletes from South Africa will be heading down under to compete in the 24th World Transplant Games. All the best to these phenomenal people representing our country. We are behind you every step of the way.

Missy

MISSY HAYES EDITOR, RARITY MAGAZINE

Awareness Days Calendar

WORLD AUTISM DAY

April 2 is International Autism Awareness Day. Did you know that according to CDC data, boys are 4.3 times more likely than girls to have autism spectrum disorder (ASD)? According to the Child Mind Institute, this is because girls "often go undiagnosed because they don't fit autism stereotypes and they mask symptoms better than boys do." There is no better way to honor this day than by learning about the traits of those who have this condition and what we can all do to promote kindness and deepen our own understanding.

WORLD HEALTH DAY

Every year on April 7, the World Health Organization selects a unique theme that is prominent in the wellness and medical industries. This day sets the tone for future events on the international stage, including everything from mental health to insurance and everything in between. The focus of this year's World Health Day will be on nurses and midwives, the restless, always-on workforce that transformed healthcare as we know it today.

WORLD HAEMOPHILIA DAY

This day is celebrated by haemophilia organisations around the world and gives them an opportunity to increase awareness of haemophilia. World Haemophilia Day was started in 1989. The World Federation of Haemophilia (WHF) chose 17 April in honour of WFH founder Frank Schnabel, who was born on that day.

World PI Week offers an opportunity to inform and educate health policymakers, schools and families, and the general public about primary immunodeficiencies (PI) to drive the earliest possible diagnosis and optimal treatment. Through events and activities promoting the warning signs of PI, the global PI community can unite to bring about positive changes in healthcare systems and practices around the world in support of people living with PI.

FREEDOM DAY

On April 27 is a national holiday in South Africa. [1] On this day in 1994, the first post-apartheid elections were held, and it is a day to celebrate freedom.

UNDIAGNOSED DAY

An event to honour those who have lost their lives as well as those who live with an undiagnosed disease and their loved ones.

WORLD PI (PRIMARY IMMUNODEFICIENCY)

WORLD HUNTINGTON’S DISEASES AWARENESS MONTH

Huntington Disease Awareness Month is celebrated in May every year. Huntington’s disease (H.D.) is a genetic disorder that has no cure. It causes a progressive breakdown of nerve cells in the brain leading to the deterioration of a person’s physical, mental, and emotional abilities.

EHLERS DANLOS AWARENESS MONTH

Every year in May, EDS Awareness Month is observed. Ehlers-Danlos syndrome (Ehlers-Danlos syndrome) is a grouping of over 13 hereditary connective tissue disorders. The condition is also known as Hypermobility Spectrum Disorder because hypermobile tissues are a common symptom (H.S.D.).

NEUROFIBROMATOSIS (NF) AWARENESS MONTH

May is NF Awareness Month, a time for members of the NF community to unite, raise awareness, educate those around them, and raise funds to support research that will lead to effective neurofibromatosis treatments (NF).

CYSTIC FIBROSIS AWARENESS MONTH

Cystic Fibrosis Awareness Month is observed in May. Thousands of volunteers will gather across the country to raise awareness about this devastating disease and to tell our story of hope and progress.

PRADER-WILLI AWARENESS MONTH

The month of May is designated as Prader Willi Syndrome Awareness Month, with the goal of raising awareness about the disorder and facilitating better support, care, and treatment for those in need.

WORLD

WORLD

WORLD

blood transfusion:

• During surgery

The average adult has about five litres of blood. If you are between the ages of 16 and 65, weigh more than 50 kg, and live a sexually healthy lifestyle, you can donate blood and save up to three lives – giving blood is one of the most selfless and rewarding acts you can do. Each blood donation is separated into its constituent parts, such as red blood cells and plasma. That way your blood can go further to save the lives of others. It can help patients suffering from life-threatening conditions live longer and with a higher quality of life and supports complex medical and surgical procedures. Here are a few main reasons why someone would need a

Treat cancer and leukemia

Children with severe anemia

Accident victims

• Women who hemorrhage during childbirth

MYASTHENIA GRAVIS AWARENESS MONTH

Myasthenia Gravis is an autoimmune disease of the neuromuscular junction caused by antibodies that block or destroy nicotinic acetylcholine receptors (AChR) at the nerve-muscle junction. This disease also causes skeletal muscle weakness in varying degrees. The muscles of the

eyes, face, and swallowing are the most affected. The onset can be abrupt, resulting in double vision, drooping eyelids, difficulty speaking, and walking. Because of increased awareness, diagnosis is becoming more common. Myasthenia Gravis affects mostly women under the age of 40 and men over the age of 60. It is unusual in children. With treatment, most affected people live relatively normal lives and have a normal life expectancy.

CHRONIC MIGRAINE & HEADACHE NATIONAL AWARENESS MONTH

Migraines are a common ailment. A migraine is a chronic and episodic disorder characterized by recurrent headaches lasting four to 72 hours, usually on one side of the head, and impairing your ability to function in everyday situations. These headaches can range from mild discomfort to a debilitating migraine. Headaches and migraines can be caused by a variety of factors, including caffeine consumption, a lack of sleep, computer screens, diet, alcohol consumption, and the time of year. They can also be associated with seasonal triggers; therefore, it is recommended that you monitor your mental health to reduce your risk of stress-related headache and migraine triggers. If you have these intractable migraines and can't seem to get a handle on them, you should seek medical attention. Symptoms usually can include nausea, vomiting, and light and sound sensitivity.

MEN’S HEALTH MONTH

The goal of Men's Health Month is to raise awareness of preventable health issues among men and boys, as well as to encourage early detection and treatment of diseases. According to statistics, men suffer from more illnesses than women and die at a younger age. As a result, efforts are being made to encourage men, boys, and their families to take control of male health issues through proper screenings and care, allowing them to live longer and healthier lives.

Even if you don't feel sick, it's critical to see your doctor on a regular basis and to schedule annual exams. You can schedule the following annual exams with your doctor:

Abdominal aortic aneurysm

Blood pressure

• Colorectal Cancer

Depression

Diabetes mellitus, type 2

Lipid disorders

• STD

INFERTILITY AWARENESS MONTH

World Infertility Awareness Month’s goal is to raise awareness about the various infertility issues that couples face around the world. Infertility is so common that it affects approximately 12% of women aged 15 to 44. The goal of the month is to raise awareness in order to dispel several myths about infertility, to improve the lives of millions of people who are unable to conceive due to a lack of scientific knowledge, and to present a variety of options to those who may wish to conceive.

The common problems that cause infertility in women include polycystic ovary syndrome, a diminished ovarian reserve in which a woman's eggs decrease with each menstrual cycle, and endometriosis, a condition in which the growth of tissue inside the uterus is moved outside. The syndrome has several stages and is often curable through medication and treatment. Because fertility issues are not uncommon, it is best to consult a doctor to identify a fertility issue before it escalates.

Scleroderma is an autoimmune disease with no known cause or cure that presents differently in each person. Scleroderma is a group of rare diseases characterized by skin hardening and tightening. It may also cause issues with blood vessels, internal organs, and the digestive tract. Scleroderma's signs and symptoms vary from person to person, depending on which parts of the body are affected.

Sore or swollen fingers

• Raynaud's phenomenon: a condition where fingers and toes change colour with temperature changes, stress or anxiety

• Reflux or heartburn

There is no cure for scleroderma, but treatments can alleviate symptoms, slow progression, and improve quality of life.

The month of May is designated as Prader Willi Syndrome Awareness Month, with the goal of raising awareness about the disorder and facilitating better support, care, and treatment for those in need.

SCLERODERMA AWARENESS MONTH

PRADER-WILLI AWARENESS MONTH

Upcoming Events

1000 MILER JOBURG TO BLOUBERG

RDSA will be hosting a range of webinars focusing on IPF. Our first webinar will be on 12 April at 19:00. Check our website for the next date!

Click here to register

It’s only April, but the entries for the 947 are open! Join the RDSA team and Pedal for our Purpose!

Brothers Henry and John will be taking on the 1000km challenge of cycling from Joburg to Blouberg raising money for RDSA in honour of their brother living with MS.

SIBLING LOVE

Our patient co-ordinator Nomsa will be hosting various webinars with our Rare Warrior’s siblings for support, love and appreciation for all they do as well as some insight on life with Rare Warriors. Check our websites for updates on the dates.

Dissecting Consent

The Protection of Personal Information Act (POPIA) 2013 supports the right to privacy and dictates requirements for the collection, use and storage of personal information. Health information is a recognised category of Special Personal Information under POPIA deserving of additional considerations and safeguards to protect the information.

Participation

Access to health care (emergency care, treatment and rehabilitation, special needs attended to for newborn infants, children, pregnant women, the aged, disabled persons, patients in pain, persons living with HIV or AIDS patients), counselling, palliative care, a positive disposition from healthcare professionals and health information).

Knowledge of medical aid scheme or health insurance

Choice of health services

Treatment by an identified practitioner

Confidentiality and privacy

Informed consent (accurate information about illness, diagnostic procedures, treatment, risks, costs and refusal)

Refusal of treatment

A second opinion

Continuity of care

Complaints of Health services

ARTICLE Komeshni Patrick

Patient rights stem from the South African Constitution and the National Health Act (NHA) 2003.

Patient rights are highlighted in the context of rare diseases as patient records are shared in the hopes of a diagnosis or better treatment.

POPIA in S26 has a general prohibition against processing health information and in S32, the prohibition falls away if usage is by:

• medical professionals, healthcare institutions or facilities or social services,

• insurance companies, medical aid scheme administrators and managed healthcare organisations,

• schools, and

• any public or private body managing the care of a child.

POPIA and the NHA focus on obtaining consent from patients for disclosure of information first, anonymising data where it can serve the purpose and minimal disclosures.

PRACTITIONERS MUST:

• obtain express consent where patients may be personally affected by the disclosure,

• provide information (what information will be shared, with whom, reasons for the disclosure and likely consequences of the disclosure);

• discuss the consequences of disclosure and non-disclosure (refusal to consent or where consent cannot be obtained).

FOR THE PURPOSES OF:

• education, research, monitoring and epidemiology, public health surveillance, identifiable data usage requires informed consent; and

• medical research, anonymised data should be used if it can suffice and express consent is required before publishing personal information in scientific media to which the public has access (journals, textbooks, publication of case histories and photographs), whether or not the practitioner believes the patient can be identified.

Records may be disclosed in the public interest where the benefits to an individual or to society outweigh the patient's interest. The NHA provides that, if no person has been mandated or legally appointed to give consent and a patient is incapable of giving consent, then in the following order of precedence, a spouse or partner, parent, grandparent, adult child or adult brother or sister may give consent. The practitioner should document in the patient's record the steps taken to obtain consent and the reasons for deciding to disclose information

Overcoming adversity

One Ironman at a Time

ARTICLE Missy Hayes

Rarity had the honour of chatting with Ironman champ, Andrew Crowe. Andrew is not only an Ironman, but he’s a RDSA Charity Champion and devoted Rare ACTIVist- a title we are so proud for him to take on. Read about how his training has helped him grow as a person and in his career.

How were you introduced into the world of triathlons? When did you start competing and why?

So, I started running in 2016 and the aim was to do a Comrades Marathon, I also wanted to swim the Midmar Mile (1.6km swim) and I wanted to do the 94.7 Joburg cycle race – these were all bucket list items for me. I then looked at the combination of the three and decided to give triathlons a go. And from that the 2020 journey to Ironman started – Ironman being the pinnacle of triathlons…and that is where it started. 2020 was the year where I would do both Comrades Marathon and Ironman. As we know 2020 was lockdown due to Covid and this derailed my plans, but I was still determined on achieving my goal.

How many Ironman’s have you completed?

I have done 3 full Ironman events, and around 6 half distances and a few Olympic and sprint events. I have also run three Comrades Marathons and numerous marathons. Mostly these have been for a cause.

What an incredible achievement- can you tell us a bit about your training routine? Did you work with a coach or learn as your trained?

The training routine is pretty hectic, it’s mainly two

sessions a day 6 days a week with one rest day. I would start the week with a rest day and then it will either be a swim and run per day or swim and cycle with a slight variation to this. Wednesdays is the usually a longer run (about an hour and 30 minutes). Weekends are usually a long bike ride on the Saturday and then a long run on the Sunday. This distances and type of training varies depending on where you are in the program. On average its around 9-10 hours a week and then 13-14 during the raining peak. I am lucky to have a coach who drafts the program and then adjusts this based on fitness. My coach, David Ashworth also monitors fatigue, nutrition and the fitness and makes these adjustments as needed. The tricky part is balancing work, social life, and the training.

Having a coach has helped me with the structure to training and keeping me honest – most training is done alone which requires a lot of discipline– this has also helped me grow as a person and has also had an incredibly positive impact on my career. Discipline is a cornerstone for me.

Often, people only think of the physical challenge of the Ironman, but your mental game needs to be just as strong- if not stronger. How did you prepare yourself mentally for the Ironman?

Yes, the mantal aspect of Ironman is often overlooked – the body can be 100% fit and ready but if your mind is not then you are in for a long day. The mental aspect is not just for race day but is the motivation and mental capacity required to keep up with the training – often it’s easy to skip sessions, or sleep in and that’s where the mental training starts. To know that after the swim and 6 hours on the bike that you still have a marathon to run… it’s not easy.

So, an integral part of my physical training is also training mentally for this. Leading up to race day I spend a lot of time planning the race through my head, planning for the inevitable mental fight during the race and how I am going to react to it. These are initial battles you need to overcome. I also take a lot of motivation from the reason why I run –I’ve experienced mental wellness issues, and these are in the forefront of why I run, overcoming adversity and achieving these small wins. With my involvement with various charities (Raising Hope for Layla, Rare Diseases, Cycling Beyond Boundaries) I have been exposed to and met people

that have much bigger challenges in life and they have shown me the strength in positive attitudes, taking an otherwise tricky situation and excelling.

Thank you for sharing that with us, would you say the mental challenge of Ironman is more brutal than the physical challenge?

Yes. Your body will do what you tell it to. The physical aspect is hard but your training sorts that out, but when you are sore, you’re fighting the elements, fighting fatigue it’s easy to stop. To execute and finish – that’s the true test and without a strong mind this is not achievable.

Also, the support you get from your loved ones and cheering strangers on the road is a huge mental motivation.

Reflecting on your triathlons- which part of the race is most challenging for you- the swim, ride or run?

The swim for me is the difficult part – and this is only due to my own anxiety around it. I am a strong runner, fairly good cyclist but the water is one of the areas that I feel is the weakest and conditions play a significant role in finishing that. I have had the unfortunate experience of having to pull out of a Midmar Mile swim halfway through and this always features in the back of my head – again the mental aspect plays a huge role here.

Time can be a restraint for athletes who don’t compete full-time. How did you prioritise training with your full-time job?

This is a hard part here. Balancing everything is very difficult. I am also in the lucky position that the company I work for is very supportive. They are aware that I use my mobility to support Rare Diseases and the other charities. However, the training and work balance and even participating in event is very difficult. It’s waking up early to train before work and then having the discipline to train after work. Travelling for business is even harder and this really influences training time.

My company has a huge drive on the wellness of its employees and creating a culture of inclusion. I have recently been appointed to support our companies “People of Determination” group where I am again using my mobility to create awareness and support to all our employees that live with a disability. I will be doing a lot more to promote this going forward.

My daily training has now become an integral part of my day and I structure a lot around it. I am a creature of habit, and my routine has made it easier to train. I am also lucky to have a partner that also does Comrades and Ironman and runs a full-time practice so often we train together and get the chance to travel together to races and spend time together whilst training. Having the support of a loved one is also very important as you sacrifice a lot of time to train.

Can you tell us about your Rare Bear? What’s his/ her name and why does he/she tag along to all your races?

So, the Rare Bear I received – and I must add was specifically made for me by the amazing ladies in Kya Sands from The Rare Bear Project. I actually put it out on social media for someone else to select his name which is Zippy. The yellow and black represent the colours of Comrades.

He has done a few 100Km cycles, he has done a Midmar Mile swim (safely tucked into a Ziploc bag secured to my waist) and has run a few 21km races. He has spent time in an airplane cockpit on his way to Comrades. He’s seen it all!

He has been a great tool to promote the work that Rare Bear Project does and has been a good mascot to share the journey to Ironman and the Comrades Marathon.

They’re a gift and place rare disease patients will never be afforded the opportunity to reach. My hope is that Expedition Uprising can encourage a greater awareness around rare diseases so that rare disease patients can receive the lifesaving treatment they deserve and so their quality of life can improve and so that they can also go on adventures like these.

What race is up next?

So, 2023 is a busy year in terms of races – Two Oceans 56km Ultra Marathon is coming up in April. The Comrades 90km Marathon in June and then Ironman in Portugal in October. So, a lot to look forward to. A lot to train for and a lot to test myself again.

Andrew, thank you so much for taking the time to share your training journey with Rarity. What you have achieved thus far is absolutely incredible and we’re excited to see you take on your next few races- especially the Ironman in Portugal. We wish you all the best with your training!

YOU ARE SPECIAL

just like everybody else

WHY BEING AUTHENTIC HAS MORE VALUE THAN BEING UNIQUE

ARTICLE Tricia Jones

The relationship between rarity and authenticity is complex and often misunderstood. While some may equate rare or unique traits with authenticity, it is important to recognise that these two concepts are not synonymous. Being authentic means being true to yourself regardless of how common or uncommon your traits may be. In fact, valuing rareness over authenticity can lead to inauthentic behaviour, as you may feel pressure to conform to societal expectations or to present yourself in a way that is perceived as unique or exceptional. Ultimately, prioritising authenticity over rarity allows you to embrace your true self and to connect with others on a deeper level, fostering a sense of belonging and empowerment.

At its core, authenticity is about being true to yourself, your values, and your beliefs. It means living your life in accordance with what you believe to be right, even if it goes against the norms or expectations of those around you. Being authentic requires vulnerability, honesty, and a willingness to embrace your imperfections. Being your authentic self is crucial to living a fulfilling and happy life. When you are true to yourself, you feel more confident, empowered, and at peace with yourself. However, showing up authentically isn't always easy, especially in a world that often pressures us to conform to certain standards and beliefs. The good news is that anyone can cultivate authenticity, and by doing so, they can inspire others to do the same. Let’s explore three key tips on how to show up more authentically in your life and help others do the same.

Tip 1: Know Yourself and Embrace Your Uniqueness

The first step to being your authentic self is to get to know who you are and what makes you unique.

Spend some time reflecting on your values, beliefs, strengths, and weaknesses. These insights will help you discover what matters most to you and what you want to accomplish in your life. Remember, everybody has values, beliefs, strengths and weaknesses, that’s what makes us the same. But it’s your combination and lived experience of them that makes you special. Embrace your uniqueness and use it to your advantage. Instead of trying to fit into someone else's mould, focus on being the best version of yourself. When you're authentic, people will be drawn to you because of who you are, not who you're trying to be.

Tip 2: Be Honest and Vulnerable

Authenticity is all about being honest and vulnerable. It's about showing your true emotions and feelings, even when it's uncomfortable. When you're open and honest, people will trust you more, and you'll build deeper relationships with them. However, vulnerability is easier said than done. It requires courage and a willingness to take risks. Start small by sharing some-

IMAGE CREDIT JS-ONE PHOTOGRAPHY

thing personal with someone you trust. As you become more comfortable with being vulnerable, you'll find that it becomes easier to do, and you'll reap the rewards of deeper, more meaningful relationships.

Tip 3: Surround Yourself with Authentic People

The people you surround yourself with can have a big impact on your ability to be authentic. Surround yourself with people who accept you for who you are and encourage you to be your best self. Authentic people are those who are true to themselves, honest, and genuine. You'll know when you've found them because they won't judge you, they won't try to change you, and they'll give you space to be yourself. When you surround yourself with authentic people, you'll feel more comfortable being your true self. You'll also have a support system to lean on when you need it.

While it may not always be easy or comfortable to show up as our authentic self, the rewards are immeasurable. By being true to ourselves, we inspire others to do the same, creating a ripple effect of authenticity and empowerment. So, let us embrace our uniqueness, celebrate our quirks, and boldly live out our most authentic selves, knowing that we are creating a more vibrant and fulfilling existence for ourselves and those around us….andthat’srare.

"At its core, authenticity is about being true to yourself, your values, and your beliefs. It means living your life in accordance with what you believe to be right, even if it goes against the norms or expectations of those around you."

Tricia Jones Capacity Builder & Leadership Coach

The

South African Cystic Fibrosis Association (SACFA) partakes in a David vs. Goliath battle to save lives.

Cystic Fibrosis (CF) is a genetic, progressive disease affecting the respiratory, digestive, and reproductive systems. The primary organs affected by this condition are the lungs and the pancreas. Patients may require life-saving lung transplants as they get older.

SACFA works to educate the public about CF and the challenges faced by people living with it. Through our services, we assist with improving access to healthcare and nutrition, raising awareness, and supporting those affected. SACFA, a registered NPO, assists with CF patients and public sector healthcare requirements.

Recently, SACFA became the second applicant in litigation action against Vertex Pharmaceuticals to allow compulsory licenses and importing for the generic versions of the life-saving modulator treatment, Trikafta.

An informal yet natural “coalition" was formed and includes aid from Rare Diseases SA, Vertex Save Us, other countries, and associations to strengthen our case and the urgency for accessible and affordable modulator treatments for all CF patients. This courageous act has received media attention on a global scale and is deemed to be groundbreaking - but for CF patients, this means a chance to live!

Our fundraising events and campaigns throughout the year raise awareness and funds needed for CF research and patient treatment. SACFA also relies on donations, corporate sponsorships and partnerships.

To support SACFA, participate in our events, donate, or volunteer your time, visit: www.sacfa.org.za or follow our social media platforms to stay informed.

Together, we can make a difference in the lives of people with CF and their families.

PATIENT PROFILES

ARTICLE ANONYMOUS

The Brave Fight

A story of hope and healing.

"In the early stages of my journey with this condition I would self-isolate because I was so self-conscious, and people can be cruel and oblivious to the battles you’re fighting."

“I'm Andi*, an ambassador for a very rare condition called Trimethylaminuria (TMAU or Fish Odour Syndrome). A condition very often mistaken for bad hygiene practices, as the bodies of patients with this condition fail to metabolize a certain compound called TMA. This compound is produced in the gut, and it is the compound that gives fish, their fish odour. In humans, it is metabolized into TMAO which is an odourless compound, but the bodies of patients of TMAU, cannot metabolize TMA. Thus, TMA is released by their bodies through sweat, urine, and saliva.

Thus, patients have a foul fish odour. Many patients tend to completely withdraw from social life, due to reactions they get from the public, and others choose to work from home and self-isolation. As you can imagine- isolating during the pandemic wasn’t so different for us like it was for the rest of the world.

My journey began in 2016 when I started noticing symptoms of my condition, however, due to the scarcity of TMAU testing centres in South Africa and the cost implications associated with getting a test done I waited a long time before my suspicions were confirmed. I was eventually diagnosed with TMAU in 2019.

My condition has no cure and can only be treated by completely removing certain foods from your diet and taking supplements, however, to figure out the winning combination that works for your own body is completely trial and error and not one size fits all so you can imagine it’s a frustrating and time-consuming process.

In the early stages of my journey with this condition I would self-isolate because I was so self-conscious, and people can be cruel and oblivious to the battles you’re fighting. My condition took a toll on my mental well-being, and I ended up in a mental institution. I’m grateful for this as who knows where I would be had I not received the help and support I so desperately wanted.

Through many counselling sessions and finding the right diet and supplements, I've been able to turn the tide. I no longer self-isolate, I'm working part-time and have since managed to complete my BCom degree at the University of Cape Town- achievements I never thought possible. In hindsight my condition has strengthened me and taught me so much. I’m a better person because of TMAU.

*Names have been changed for the privacy of our Warrior.

I've learned to be more patient and understanding of others who may be going through struggles that are not visible on the surface. It’s always important to take a step back and acknowledge that you only understand a very small portion of what someone is going through so always be kind.

Read more >

Escape to the

Boshuis

ARTICLE Missy Hayes

What does a family do when they fall in love with the beauty of the George area? Well, they share this special slice of heaven with the world in the form of Boshuis under Sanjika Escapes. Read about this beautiful getaway…

George offers the best of both worlds with forests and beaches and Sanjika Escapes takes advantage of this by offering beachside accommodation as well as a home in the forest available for rent.

The forest getaway is called the Boshuis. It is a self-catering house and although it is just 15 minutes away from the George Airport, it feels like you’re miles away from civilisation surrounded by the chirping of the birds, the sound of the nearby stream and the feel of the fresh mountain air. It is nestled in an indigenous forest at the foot of the Outeniqua mountains where rest and relaxation are guaranteed.

The house has two bedrooms, both en suite and both furnished with King-size, extra length beds. The en suite bathrooms are fitted with soaking tubs that have exquisite views, inside and outside showers, toilet, and basin. The beds can be separated into single bed upon request for friends renting the house for a weekend.

The Boshuis is an off-grid getaway that uses solar energy, gas, and borehole water. Although off the grid, there is still Wi-Fi! The house offers multiple comfortable sitting areas, which include an indoor braai area, fireplace, outside fire pit and pizza oven, their aim is to make you feel at home and experience the beauty and restorative powers of nature. A bag of firewood and matches are provided for you to cosy up on the chilly nights.

For all the foodies and cooking enthusiasts, the kitchen is well equipped and includes a four-plate gas hob, microwave, toaster, and fridge/freezers. The basics such as salt, pepper, braai salt, olive oil, black tea, rooibos, ground coffee and sugar are provided for your convenience.

For you to enjoy this space, Sanjika Escapes are happy to share where to find the best, local fresh produce. They also have an expansive veggie garden that they are welcome to explore. To top off their generosity, they include a complimentary welcome pack with 6 eggs from their chickens, a bottle of homemade piquante peppers and a jar of farm baked rusks. What more could you ask for from these amazing hosts?

Here some frequently asked questions you may have when considering heading to this beautiful getaway:

Do you need a 4x4 to reach the Boshuis?

They recommend using a higher car, like an SUV or bakkie. The dirt road to the farm office is perfectly accessible by all vehicles, but then the rest of the way to the Boshuis is slightly more rocky and you need to cross two low-lying bridges.

Do they serve meals?

Unfortunately not, the Boshuis is self-catering.

Are the units pet friendly?

Unfortunately, we do not allow any pets in any of our units.

Are the units child friendly?

Yes, they encourage family holidays, so please feel free to take children along. Please be aware that the Boshuis is situated close to a small river and there are dams on the farm, so please watch your children carefully.

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Must Read Books

01

WHERE THE CRAWDADS SING

AUTHOR: DELIA OWENS

Ok, this isn’t exactly a new release, but this book has been on the New York Times Best Sellers list for 188 weeks (that’s more than 3 years). So, if you have not read Where the Crawdads Sing, get reading!

About the book: Abandoned by her family at a tender age, a solitary Catherine attempts to fend for herself, much to society's dismay. Soon, she finds herself framed for her former boyfriend's death.

02 MAKE YOUR BED

AUTHOR: ADMIRALWILLIAMH.MCRAVEN

If you want to change the world, start off by making your bed…

About the book: On May 17, 2014, Admiral William H. McRaven addressed the graduating class of the University of Texas at Austin on their Commencement Day. Taking inspiration from the university’s slogan, “What starts here changes the world,” he shared the ten principles he learned during Navy Seal training that helped him overcome challenges not only in his training and long Naval career, but also throughout his life; and he explained how anyone can use these basic lessons to change themselves-and the world-for the better.

Admiral McRaven’s original speech went viral with over 10 million views. Building on the core tenets laid out in his speech, McRaven now recounts tales from his own life and from those of people he encountered during his military service who dealt with hardship and made tough decisions with determination, compassion, honour, and courage. Told with great humility and optimism, this timeless book provides simple wisdom, practical advice, and words of encouragement that will inspire readers to achieve more, even in life’s darkest moments.

If your goal for 2023 is less screentime then here are a few top-rated books to escape in. We’ve included some light-hearted novels for the fiction enthusiasts and some non-fiction for our critical thinkers.

03 IT ENDS WITH US

AUTHOR: COLLEEN HOOVER

It Ends with Us has also sat on the New York Times Best Seller List for a decent amount of time. This book’s core message is about choosing to end a cycle of violence that hurts more people than it helps.

About the book: It Ends with Us is a book that follows a girl named Lily who has just moved and is ready to start her life after college. Lily then meets a guy named Ryle and she falls for him. As she is developing feelings for Ryle, Atlas, her first love, reappears and challenges the relationship between Lily and Ryle.

04 THE BODY KEEPS THE SCORE

AUTHOR: BESSEL VAN DER KOLK

Here’s another New York Times Best Sellers list resident with a whopping 2 years and still going strong. This book is a tool to rebuild step by step the ability to “know what you know and feel what you feel.”

About the book: What causes people to continually relive what they most want to forget, and what treatments could help restore them to a life with purpose and joy? Here, Dr Bessel van der Kolk offers a new paradigm for effectively treating traumatic stress. Neither talking nor drug therapies have proven entirely satisfactory. With stories of his own work and those of specialists around the globe, The Body Keeps the Score sheds new light on the routes away from trauma - which lie in the regulation and syncing of body and mind, using sport, drama, yoga, mindfulness, meditation and other routes to equilibrium.

05 COLOUR ME YELLOW

AUTHOR: THULI NHLAPO

Thuli writes with eviscerating bluntness in her memoir about her search for identity in a family that did not accept her from the moment she was born. She spares no-one in her family, not even herself, as she searches for her true origins. This book is raw and powerful!

About the book: Thuli Nhlapo was seven years old when she realised that no one called her by name. Known as "Yellow", she was bullied at home and at school. Fearing that she had a terrible disease, she withdrew into herself. Years later, Thuli is still haunted by her childhood experiences. She confronts her mother about her real father. Getting no answers, Thuli embarks on years of searching for the truth. In the process, she uncovers unsettling family secrets that irrevocably change all their lives.

AUTHOR: BONNIE GARMUS

If you’re looking for a laugh-out-loud, spunky book with strong female characters then Lessons in Chemistry is the book for you! It’s a story of resilience and determination.

About the book: Chemist Elizabeth Zott is not your average woman. In fact, Elizabeth Zott would be the first to point out that there is no such thing as an average woman. But it’s the early 1960s and her all-male team at Hastings Research Institute takes a very unscientific view of equality. Except for one: Calvin Evans; the lonely, brilliant, Nobel–prize nominated grudge-holder who falls in love with—of all things—her mind. True chemistry results.

But like science, life is unpredictable. Which is why a few years later Elizabeth Zott finds herself not only a single mother, but the reluctant star of America’s most beloved cooking show Supper at Six. Elizabeth’s unusual approach to cooking (“combine one tablespoon acetic acid with a pinch of sodium chloride”) proves revolutionary. But as her following grows, not everyone is happy. Because as it turns out, Elizabeth Zott isn’t just teaching women to cook. She’s daring them to change the status quo.

07 THE BODY

AUTHOR: BILL BRYSON

Bestselling, prize-winning author, Bill Bryson achieved the seemingly impossible by making the science of our world both understandable and entertaining to millions of people around the globe.

About the book: Bill Bryson turns his attention inwards to explore the human body, how it functions and its remarkable ability to heal itself. Full of extraordinary facts and astonishing stories, The Body: A Guide for Occupants is a brilliant, often very funny attempt to understand the miracle of our physical and neurological make up.

08 WHY HAS NOBODY TOLD ME THIS BEFORE?

AUTHOR: DR JULIE SMITH

Our mental well-being is just as important as our physical well-being. As times change and we navigate the digital era, our mental health can often take strain and it’s so important to empower

About the book: Filled with secrets from a therapist's toolkit, Why Has Nobody Told Me This Before? teaches you how to fortify and maintain your mental health, even in the most trying of times. Dr Julie Smith's expert advice and powerful coping techniques will help you stay resilient, whether you want to manage anxiety, deal with criticism, cope with

depression, build self-confidence, find motivation, or learn to forgive yourself. The book tackles everyday issues and offers practical solutions in bite-sized, easy-to-digest entries which make it easy to quickly find specific information and guidance.

AUTHOR: JENNY JACKSON

If you were a Gossip Girl enthusiast, then this book is for you! Escape to the street of the Upper East Side and Brooklyn with Ms. Jackson’s latest novel.

About the book: Jenny Jackson’s new novel Pineapple Street (Pamela Dornan) is a delicious new Gilded Age family drama—almost a satire— set in the leafy enclaves of Brooklyn Heights. The book follows three women in the Stockton family, a clan that made their money in real estate and left subsequent generations to alternately indulge in and wring their hands over it, their angst inflected with a very New York 1% class consciousness.

Family members make their way from their non-profit jobs and school fundraisers to tennis clubs and private planes. It’s a light-hearted book that captures a slice of New York society, a guilty pleasure that also feels like a sociological text, punctuated with very particular references to restaurants, preschools, nightclubs, and other pillars of urban life in 2023.

10 THE POWER OF MOMENTS: WHY CERTAIN EXPERIENCES HAVE EXTRAORDINARY IMPACT

AUTHOR: CHIP HEATH AND DAN HEATH

Chip and Dan are New York Times bestselling authors and they’ve come out with a fascinating book on experiences and how one extraordinary moment can change our lives and work. If you’re fascinated by the human mind- this book is for you!

About the book: This book delves into some fascinating mysteries of experience: Why we tend to remember the best or worst moment of an experience, as well as the last moment, and forget the rest. Why “we feel most comfortable when things are certain, but we feel most alive when they’re not.” And why our most cherished memories are clustered into a brief period during our youth.

09 PINEAPPLE STREET

RESEARCH

SACSOS

Can you believe that it is less than a year since the National State of Disaster was lifted in South Africa? After more than two years of the Covid-19 pandemic life still feels very surreal – we know that it happened but it’s all a bit of a blur! Many of us are still feeling the aftershocks, having lost family and friends. The pandemic had massive consequences for many people, including those living with rare diseases who are more vulnerable to the virus, their families and caregivers, and the doctors treating them.

A key impact of the pandemic was the shift in healthcare required to mount the Covid-19 emergency response, which required many doctors and other healthcare workers to be redirected to treat Covid-19 patients and related services. This resulted in extensive disruptions to healthcare services, particularly surgical services. Many non-emergency surgeries (categorised as “elective”) were delayed indefinitely, and this resulted in a huge surgical backlog as life has returned to “normal”. Many rare disease patients avoided hospitals altogether for fear of contracting the Covid-19 virus and for many, ongoing, essential treatments were cancelled. So, the question we now face is - how do we catch up with the

backlog of surgeries? And perhaps more importantly, how do we catch up safely?

This question is being tackled by the South African Covid-19 Surgical Outcomes Study (SACSOS), led by Safe Surgery SA in collaboration with COVIDSurg SA investigators and RDSA. And it is the patients who are providing the answers! This is called “citizen science” – where the patients themselves, not the professionals, are in charge of collecting the data, making it truly patient-centric.

SACSOS is looking at how patients report their outcomes directly after surgery in the first month, after six months and one year - both during and following the Covid-19 pandemic in South Africa (SA). Patient recruitment began in September 2021 and will continue for two years until September 2023. To be included in the study you must be at least 18 years of age and have a non-emergency surgical procedure performed at a South African hospital included in the study. Patients are recruited by their doctor and participate by capturing their own data on a web-based patient platform called the Perioperative Shared Health Record (PSHR). Pretty neat!

The study aims to better understand the impact of the pandemic on patients undergoing surgery in SA and answer questions such as: Do patients without Covid-19 recover better from surgery than those with the virus? When is the best time for a patient to have surgery after being infected with Covid-19? What impact did the pandemic have on how well patients recovered from surgery?

The data that the patient reports is anonymised, compliant with the Protection of Personal Information (POPI) Act of 2013, securely stored and covered by ethics (reference number SMUREC/M/184/2020:IR) from Sefako Makgatho Health Sciences University Research Ethics Committee (SMUREC). The data collected includes:

Demographics (age, weight, gender, height etc)

Comorbidities (diabetes, asthma, cancer etc)

Quality of life before surgery and after surgery (at six months & 12 months)

Covid-19 diagnosis before surgery

Surgery details

Outcomes after surgery – at discharge, six months & 12 months

CLUBFOOT AFRICA Conference

Over 260 participants from 42 countries participated in a two-day, hybrid event, from 21-22 November 2022 in Cape Town focusing on Clubfoot in Africa, organised by Steps Charity NPC in partnership with the South African Paediatric Orthopaedic Society (SAPOS).

Participants of this hybrid event included medical experts and a diverse range of stakeholders who met to discuss the progress, challenges and solutions to implementing clubfoot treatment, with a focus on restricted resource settings. New developments, innovations and technologies to build capacity and sustainability for the future were also on the agenda.

The three themes of the conference were:

Clubfoot treatment in resource restricted settings

Innovation and technology in the treatment of clubfoot

Clubfoot in the older walking child

RDSA’s own Director of Research and Epidemiology, Dr Helen Malherbe was invited to give a keynote lecture on “the patient centred approach to birth defects”. Helen received great feedback on her talk, which many participants indicated was “food for thought” within the wider context of birth defects in Africa.

According to Karen Moss, the Steps Founder and Director, there were many take home messages from the conference. The diversity of the programme and participants included all those involved in clubfoot treatment which served to highlight the immense value of connection and coming together to learn and share.

Congratulations on a great conference Steps!

"...there were many take home messages from the conference"

Karen Moss Steps Founder and Director

Rare News Share your colours

February, our month. A month to shine bright and bold, a month to celebrate our achievements as a community and a month to highlight the changes we’d like to see in South Africa for people living with a rare disease.

Rare Disease Day falls on 28 February each year (the 29th of February during leap years) and is a critical opportunity to bring together all stakeholders including patients, families, care givers, healthcare professionals, researchers, clinicians, policy makers and the general public, to collectively raise awareness for vulnerable rare disease patients who are often under-recognised and under-represented.

The theme for this year’s Rare Disease Day was “Share Your Colours”. Our team went to town with this theme and splashed the pages of our social media with more colours than a rainbow! We hosted social media challenges with daily prompts for our Rare Warriors and Rare ACTIVists and everyone who took part had a blast!

You may have even seen us on likes of SABC and Expresso Morning Show or featured in your local paper or school newsletter. Of course, while Rare Disease Day is to honour our Warriors, it’s also so important for us to create much needed awareness amongst the public. For those of us in this community we understand and have experienced firsthand that rare diseases are often misunderstood, with some patients spending up to 10 years waiting for an accurate diagnosis. Years of uncertainty can be physically, mentally, and financially taxing. Therefore, every inch of awareness raised is another

step towards our ultimate goal.

We were thrilled this year to host our Annual Denim Walk at the Walter Sisulu National Botanical Gardens again after a 3-year hiatus due to the pandemic. The RDSA team set up an amazing 3km walk for all our attendees which was followed by an impromptu “art class” which involved us all painting our t-shirts, hands and faces with all the colours! We had exceptional vendors providing the caffeine and sugar necessary to keep us going. Not to mention the delicious boerie rolls, candy floss and popcorn. But what really made the event was our community showing up!

Not only did we take over the gardens with our colour and spirit, but the general public visiting the gardens engaged with us, asked questions and walked away with more knowledge and awareness about our community.

RDSA would like to thank the incredible staff of the Walter Sisulu National Botanical Gardens for allowing us to host our walk there again. You went above and beyond to ensure all our attendees had a magical time.

We’d also like to thank every single person, school, HCP, and company for purchasing stickers, t-shirts and other rare merch. Every inch of support goes a very long way. If you missed out on this year’s festivities have a look at our calendar to see what else you can get involved in and don’t forget- there’s always Rare Disease Day 2024!

Rare Diseases South Africa ongoing goals for 2023:

Rare Disease Policy to be recognised and enforced in SA, and National Treasury to assign a budget to treat these patients. We do however acknowledge that the healthcare system in SA faces a multitude of a challenges, and certain aspects are niche and nuanced in terms of rare diseases.

Mechanisms to escalate product registration where there are no existing products or alternatives available for rare disease patients.

Upskilling for healthcare professionals in terms of:

knowing that rare diseases exist. knowing the impact that these have on the patient.

knowing where to refer a patient who they think may have a rare condition.

how to get involved

You can Share Your Colours at any time of the year and create much-needed #RarenessAwaress. Here's how

a corporate, school, influencer, warrior or an individual and #ShareYourColours. You'll receive a FREE toolkit with all the info and goodies to make your campaign pop.

Get educated on various Rare Disease facts by visiting our website or social media pages

Donate to RDSA

Follow @rarediseasessa on Facebook, Twitter, Instagram or LinkedIn.

If you or a loved one is suffering from unexplainable or unrecognisable signs and symptoms, speak to your healthcare professional. South Africans living with rare diseases could have extended and improved lives by taking this first step to diagnosis and treatment.

T h e P e r i - o p e r a t i v e S h a r e d H e a l t h R e c o r d ( P S H R ) i s a s e c u r e o n l i n e d i g i t a l h e a l t h t o o l f o c u s e d o n p a t i e n t - r e p o r t e d p o s t - o p e r a t i v e o u t c o m e s .

A l l p e r s o n a l p a t i e n t i n f o r m a t i o n i s s t o r e d s e c u r e l y a n d w i l l o n l y b e v i s i b l e t o t h e p a t i e n t a n d t h e i r s e l e c t e d h e a l t h c a r e p r o v i d e r s .

this card could save your life

Patient ID Cards contain all the important information pertaining to your rare disease or congenital disorder. Should you find yourself in a medical emergency, your ID Card will inform those around you about your medical condition and how they can best assist you.

Perfect to slip into your child’s school bag or to keep in your car this card could save your life.

order yours today

Back to

Basics

In a fast-paced world where convenience and technology rule our lives, we are losing touch with nature and our ability to take better care of our health. Both physically and mentally. Sure, there are elements that are out of control, but we are still in control of what we feed our bodies.

It is our choice to buy store bought produce that has a longer than natural shelf life, wrapped in plastic or we can choose to grow our own fresh produce in the comfort of our own gardens.

Authentic Roots Collection of plantable storybooks encourages children to grow their own healthy food. By creating curi-

"To nurture a garden is to feed not just the body, but the soul."

Alfred Austin

ARTICLE Tanya Van Rees - author of the first plantable children's storybook in South Africa

osity and making planting food fun, helps parents to better engage with their children about eating healthy food.

The benefit of growing your own food is endless. From the nutritional value and mental wellbeing of just picking your own food and cooking with it, to creating less harm to our environment. Just being out in nature is a source of well-being.

If you do not have any garden space and have a big enough flowerpot – use that! Grow your favourite herbs.

Adding something fresh from your garden to your plate, even if it is just basil leaves, is a great start and an excellent choice!

HOW TO START A FOOD GARDEN

If you have never grown your own food, the thought of starting a food garden can be daunting, but my advice is to start small. Start with a salad garden. Here are a few easy peasy steps:

Choose a small sunny enough space in your garden. Mix compost in with the soil. Start with seedlings, not seeds. Choose your favourite salad ingredients, e.g., leafy greens such lettuce and baby spinach, some herbs, rocket, basil, parsley and other crunchy veggies, radish, peppers, and tomatoes. Well, technically tomatoes are a fruit, and we are tyring to be less technical here.

Add edible flowers for decadence and colour.

Marigolds and nasturtiums make good insect repellents.

Water daily and weed out the weeds (that is the therapeutic part, believe it or not).

BEAUTY

In addition to ensuring we do better for our bodies and our planet, there has been a rise in skin condition and allergic reactions to artificial ingredients in skincare which is why bug brands have invested in creating more natural products with less irritants.

The clean beauty movement has been great in this way, by raising awareness of skin conditions and offering amazing options for people who want to prioritise their health without sacrificing the quality of their products.

While the industry may argue that questionable ingredients are not harmful in small amounts, clean beauty advocates don’t think it’s worth the risk!

The Ins and Outs of

PARABENS

Parabens are used as a preservative to increase the shelf life of cosmetics. The problem with parabens is that they can cause allergic reactions and skin rashes.

ARTICLE Missy Hayes

Clean Beauty

We’re all well versed in clean eating and clean living, but what exactly is clean beauty? Have you heard about ingredients such as parabens and sulfate? Or wondered how your body cream could be organic and your face cream deemed “green”. We’re breaking down clean beauty so it’s a little easier to grasp the next time you’re selecting your beauty products.

Clean beauty is much like clean eating, it’s a choice people make to use products free of toxic ingredients and ingredients harmful to the earth. Consumers across all markets are growing more aware of the products they use and what ingredients go into them. By investing in clean products, you’re prioritising a healthier life! The clean beauty movement is a huge part of this larger wave of awareness about the products we use and where our ingredients come from.

PHTHALATES

Try pronouncing this in one go?! This funny-sounding ingredient is used in your cosmetics to make the fragrance (which is probably full of chemicals itself) bind to the product. This might make your cream smell lovely, but there’s nothing good about it.

Like parabens, phthalates can irritate your skin and negatively affect hormones (although the chances are very slim). It’s always best to steer clear and instead look for products with essential oils for fragrance.

SULFATES

You know satisfying, bubbly, luxurious lather that your shampoo creates when washing your hair? Those bubbles are usually from sulfates, a harsh cleanser that’s often derived from synthetic ingredients (although sometimes they can come from coconut or palm oil (otherwise known as the bad oil)).

One particular sulfate, sodium lauryl sulfate (SLS), is particularly rough on your skin, teeth, and hair, which is why you should avoid it like the plague!

More concerning than SLS is its little friend, sodium laureth sulfate (SLES), which is converted from SLS by a method called ethoxylation- I know big words. The issue here is that once converted to SLES, the compound can become contaminated with 1,4 dioxane, a noted human carcinogen.

SLES has gotten a lot of attention in the clean beauty community over the years. It was brought to consumers attention by David Suzuki’s Dirty Dozen list which you can view here if you’re looking for more in depth information.

FORMALDEHYDE

Formaldehyde is another preservative used in cosmetics. While it might increase shelf-life, it’s carcinogenic. Today formaldehyde has been banned from many cosmetic products, but its effects are mimicked in other similar ingredients, namely: formalin, methanal, and methylene glycol.

While there are other harmful ingredients in cosmetic products these are the most common and the ones you’ve got to look out for.

Much like clean eating, clean beauty is a process. We’re not suggesting you rummage through all your products and throw away everything that contains these ingredients, but slowly become mindful of what you put onto your skin and in your hair. When it comes down to it, clean beauty is about saying no to ingredients that can be harmful to you, your family, and the environment. Instead, say yes to cosmetics with natural ingredients that work!

Team Transplant

on their way to the World Transplant Games

ARTICLE Vivian de Klerk (SATSA)

When Team Transplant South Africa depart for Australia on 13 April to compete in the 24th World Transplant Games, it marks a momentous journey for all of them. To have gotten into this prestigious team, each athlete had to go through a strict qualification process, stay healthy, train, and raise enough funds to pay for their trip. What makes this group of athletes even more special is that each of them had a lifesaving organ transplant. This will be their opportunity to show the world what can be achieved after an organ transplant and in this way pay tribute to their donors and donor families.

The World Transplant Games takes place from 15 April to 21 April in Perth, Australia. These Games will bring of estimate 1500 transplant athletes, their supporters, and families together to celebrate the ultimate gift of life. Various sporting codes such as athletics, tennis, golf, swimming, and cycling will be practices during this week. The World Transplant Games are

open to those who had kidney, heart, lung, pancreas, liver, stem cells and bone marrow transplants. The World Transplant Games (WTG) is held every two years and South Africa has been participating since 1993. In 1997 the Team was, for the first time, awarded South African colours. South Africa for the first time, participated in the Winter World Transplant Games held in France in January 2010.

The athletes traveling to Perth are all members of the South African Transplant Sports Association (SATSA). The Association aims to be a leader in optimising the quality of life of organ transplant recipients, and through sports and other physical activities, promote organ donation and transplantation. Transplant Games Association of South Africa (TGASA) was established in April 1994 by a small group of organ-transplantees, who felt the need for an organisation that would promote an active lifestyle and an involvement in various sporting activities to transplant recipients. In September 2006 the Associations name was

changed to South African Transplant Sports Association and a new Constitution adopted. The South Africa Transplant Sports Association is a member of the World Transplant Games Federation and is recognised by the Department of Sport and Recreation in South Africa.

To have gotten to this point in their sporting career and represent their country on an international sporting stage, all athletes had to compete and qualify at the SA Transplant Games that took place in Gqeberha last year. After the Games they had to re-qualify to have been selected to represent their country and be awarded Protea Colours in Transplant Sports.

One of the current success stories coming from Transplant Sports must certainly be Chantel Memziwa, a fire fighter working at Cape Town International Airport. Chantel was diagnosed with Non-Hodgkin’s Lymphoma in 2017 and had her life saving bone marrow transplant in 2021. She made a full recovery and were able to participate at the SA National Transplant Games in 2022 and qualify for this year’s World Transplant Games. Chantel is a true example of what these special athletes achieved thus far. Chantel is an avid runner and ran during chemotherapy completing the Virtual Cape Town Marathon in October 2020. She has successfully completed several marathons and aim to participate in the Comrades Marathon in the future. This will be Chantell’s first time representing #TeamTransplant_SA where she will be competing in the 100m track event.

The South African Transplant Sports Association invites all transplantees, their families and those working in the transplant field to become a member of the Association.

If you would like to follow their journey to the World Transplant Games or become a member of #TeamTransplant_SA, please like and follow their social media pages or check out their website.

taking it offline

Must-Visit Profiles

Last year our segment was dedicated to Mother’s Day and all things special to celebrate Moms on their day. So, this year we’re focusing on doting on the Dads!

The usual go-to gifts in most households would be anything braai or beer related so this year we’re encouraging you to think out the box while focusing on supporting local.

Ok, Father’s Day may be in winter, but what man doesn’t love a funky pair of swim shorts? Granadilla offers all kinds of patterns in an array of colours and you can also choose between long, standard and short length shorts. Granadilla is made for South Africans in South Africa so support local this Father’s Day and your Dad will be the most stylish on the block (or beach).

www.granadillaswim.com

granadillaswim

granadilla.swim

Nifty Gifts was founded in 2018 and they take time to create bespoke gifts for your loved ones. We know Dad’s love tools for DIY, and this is a fun one! The tools are in an oil jug shaped kit! The tool set contains the following tools a voltage tester, a plier, a Hex Key two precision screwdrivers and more. PS- it’s currently on sale!

www.niftygifts.co.za

niftygiftsza

niftygifts.co.za

Are you even South African if you don’t eat biltong? The cool part of ordering a biltong hamper from Hamperlicious is that you can customise your price range and they create your hamper accordingly so you can spoil your Dad with all the tasty treats that suit your budget!

www.hamperlicious.co.za

hamperlicious.sa

hamperlicious

This ones for the Dad’s that travel for work. There’s something extra special about a personalised gift, whether it’s initials or a nickname or the best title of course being Dad, you can order this divine leather bag and travel tag for this Father’s Day. There are a wide selection of products on offer from these South African sisters so definitely check out their online store!

www.journeyleather.co.za

journeyleather

journeyleather

With an unwavering dedication to sustainability, Woodish has risen to be a world-class creator of wood products. They offer watches, rings, and our recommendation- sunglasses! Woodish has an array of different woods, finishes and lenses options. This is a gift that will last forever and every time the sun shines and your Dad needs his sunglasses, he’ll think of his sweet family who gifted them to him.

www.woodish.co.za

woodishwatch

woodishsa

HANDPRINT/FOOTPRINT KEYRING

Here’s one for the sentimental! The keyrings that Hello Cool make are actually engraved with the child’s handprint or footprint on the one side and a personalised message on the other. This gift is more for the Moms with new babas looking to make their partner’s first Father’s Day a special one.

www.hellocool.co.za

hellocooldesigns

hellocooldesigns

SWIM SHORTS

TOOL KIT

BILTONG HAMPER

PERSONALISED LEATHER TOILETRY BAG AND LUGGAGE TAG

WOODEN SUNGLASSES

South African Haemophilia Foundation: Advocating for Access to Care and Empowering Patients.

ARTICLE Lebohang Sefojane

The South African Haemophilia Foundation (SAHF) is a non-profit organization that has been serving the bleeding disorders community in South Africa and beyond for over 50 years. Their mission is to improve the quality of life of people with haemophilia, von Willebrand disease, and other bleeding disorders through patient empowerment, advocacy, education, and research.

SAHF's patient empowerment initiatives aim to provide people with bleeding disorders with the knowledge and tools to manage their condition effectively, increase their self-confidence, and improve their quality of life. The foundation also advocates for the rights of people with bleeding disorders by working with governments and healthcare providers to ensure that they have access to the care and treatments they need.

SAHF's Work in Clinical Trials and Medical Research for Bleeding Disorders

Through its advocacy efforts, the foundation aims to increase public awareness of bleeding disorders, improve access to diagnosis and treatment, and promote research into new treatments. The foundation works closely with its Medical Advisory and Scientific Council (MASAC) to provide guidance on clinical care, research, and education. MASAC is composed of medical professionals who specialize in bleeding disorders, and they provide the SAHF with expert advice on medical research and treatment options, paving the way for improved treatments and better patient outcomes.

Celebrating World Haemophilia Day 2023

SAHF has been a champion of the bleeding disorders community, working tirelessly to raise awareness and advocate for improved access to care and treatment. This year, SAHF is inviting the public to join them in celebrating World Haemophilia Day on April 17th with the theme of "Access for All: Prevention of bleeds as the global standard of care."

Throughout the month of April, SAHF will be organizing events and campaigns to raise awareness about bleeding disorders and the importance of access to care.

How to Get Involved with the SAHF

If you're interested in supporting the SAHF's initiatives, there are several ways you can get involved. You can volunteer your time, skills, and resources to help the foundation achieve its goals.

The foundation welcomes volunteers who can help with event planning, fundraising, and patient support. You can also donate to the foundation to support their initiatives, such as providing education and resources to individuals with bleeding disorders or funding clinical trials and research studies.

To learn more about SAHF and how to get involved, visit their website at www.haemophilia.org.za. or follow them on social media, If you're passionate about advocating for bleeding disorders awareness and supporting the bleeding disorders community, the SAHF welcomes you to join their efforts. Young people are encouraged to get involved and volunteer their time to help support the cause. Together, we can help improve the lives of people with bleeding disorders and work towards a world where access to care is a global standard.

17

April 2023