TASCA Newsletter - Spring 2020

EDITION: SPRING 2020

Chair’s Address

Welcome to the Spring Edition of TASCA’s Newsletter As with everyone in Victoria, especially Melbourne, we continue to be impacted by the effects of COVID-19, with staff working from home, teleconferencing meetings and increasing our digital presence for all our members.

Despite the restrictions, we have continued to make progress in our advocacy work and are pleased with our adaptability under difficult circumstances.

Face Masks Delivery Through the Victorian Government and the Department of Health and Human Services (DHHS) we were able to procure a large number of both disposable and reusable masks. These were sent to all our members to use, as per DHHS requirements. We hope that you all wear them in good health and stay safe.

TASCA 2020 AGM This year the TASCA AGM is going digital. Join us on November 11, 2020 as we review our previous years outcomes and look to the future. Broadcasting will be live via zoom and any voting will take place online in the week prior.

CALL FOR NOMINTATIONS

TASCA is formally calling for nominations to the Committee of Management for the period 2021 - 2022. The Committee consists of 9 positions, 8 of which are currently filled.

The Committee of Management positions are as follows: Executive Committee

General Committee

Chair - Peter Verveniotis Deputy Chair - Robbin Visskodeti Treasurer - Joanne Mucciciaro Secretary - Pat Bollard

Yannis Androulakis Ella Luong Karen Parr Dr John Malios

Therefore, one General Member position will be open to nominations from current financial members. The term of the position will be two years as per the Rules of Association.

To nominate yourself or someone else for this position please submit a completed nomination form via post or email to secretary@tasca.org.au. The deadline for applications is 5:00pm, October 21, 2020, Final appointment will be made via vote at the 2020 TASCA AGM. RSVP FOR THE AGM bit.ly/TASCA_AGM

CONTENTS

NOMINATION FORM bit.ly/TASCANominate

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If1 anyone is interested in additional face masks, either disposable or reusable, please give us a call.

2

Mental Health Support

3 may be seen through our digital presence, we As have been highlighting the need for mental health 4 support for chronic illness sufferers, their carers and families. Last week we met with the Chief Advisor to Health Minister Mikakos as an initial discussion about our needs and requirements.

5 With the help of Dr John Malios (TASCA Medical Advisor) we were able to highlight the issues faced by many with Thalassaemia or Sickle Cell 6 Anaemia and will continue to pursue this muchneeded resource.

IN THIS EDITION 1-

Chair’s Address

TASCA 2020 AGM

2 -

TASCA Update

7 AGM (Annual General Meeting)

3-

Upcoming Events

4-

Irma’s Journey

Please note that we will be holding our annual general meeting on November 11, 2020 at 7:00pm.

8 This will be a virtual meeting held on zoom.

5-

Research Developments

6-

Who’s Inspiring Us?

7-

TASCA Online

Around Australia

8-

TASCA4Kids

9 Stay safe 10 Peter Verveniotis TASCA Chair

Flowers by Kathleen Kelly 103 Centre Dandenong Rd. Dingley Village 03 9551 0089 Open 7 Days

TASCA UPDATE FREE MEMBERSHIP UNTIL 2021 As 2020 has proven to be a challenging year for us all, and in the spirit of continued support for our community, the Executive Committee has decided to make some changes to our membership program.

We understand that many are experiencing financial, health and/or mental health issues due to the pandemic, the amount of information (and misinformation) that is being delivered and the general uncertainty that is present in the community for us all.

MASKS FOR MEMBERS This August TASCA partnered with DHHS to obtain both disposable and reusable masks to share with members. We are happy to see these were well received and glad that you are all taking precautions to stay safe out there!

TASCA has continued to work on the key areas of engagement, support and education under what are very unusual and often difficult circumstances.

As a gesture of support and understanding, the Executive Committee has voted to put 2020 membership fees on hold. What will this mean for you? Nothing will change from our perspective.

Memberships will be on hold until September 1, 2021 and reminders will be sent to all members in August 2021. However, we encourage all members, their families and carers to continue engaging with us in all our online activities, especially the chat groups. Also, we would like to extend an invitation to members to encourage friends and family to join our organisation and support TASCA’s ongoing role in the community.

COMING SOON - TASCA STORE Just in time for Christmas, TASCA will be launching an online store.

Here you will be able to purchase TASCA branded products. Show your support for TASCA with great stocking and gift ideas!

92 Bignell Rd | Bentleigh East | VIC | 3165 +61 3 7015 5637 info@tasca.org.au www.tasca.org.au TASCA acknowledges Australia’s first peoples as the traditional owners and custodians of the land on which we meet and provide our services to those affected by genetic haemoglobin disorders. We pay our respect to them and their cultures, and to elders both past and present.

With a few masks left over, TASCA also partnered with FED cafe, offering them to locals and promoting awareness of TASCA while doing so.

If you would like additional items, please contact the office to make arrangements.

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Join us on zoom every Wednesday!

Add TASCA Talk to your Google Calendar:

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IRMA’S JOURNEY Hi my name is Irma Shelton.

I was diagnosed with a grade 4 GBM Brain Tumour on April the 5th, 2019.

The past year has not been easy, but with the support and love from my family and friends, I’ve been able to maintain hope and strength throughout my journey.

My diagnosis was such an unexpected shock that for a month I was in total denial. My mindset turned to “NO, this is NOT happening to me, I was just working one day prior and functioning fine”.

Working in a hospital, Monash in Clayton, made this harder to accept, as I was now being admitted here as an inpatient for 5 weeks following my MRI. The next step was a biopsy, and the wait was a nightmare. Chemo and radiation 5 days a week was now my new reality.

I didn’t want to talk about my tumour because I wasn’t ready to accept it.

Talking about it would make it real and I was still holding on to my old reality.

My surroundings stood still and my mind was silent as I lay there watching the ceiling fan going around and around.

My world turned upside down; what the hell happened in the last 8 months?

Often, I think, if there is a God, why is he doing this? My poor family, trying to cope with my new reality, that is now a part of theirs too.

It is easy to get lost in your thoughts and at times I feel like a burden, stuck in a wheelchair or bed, and totally dependent on another person, but I am so blessed and fortunate to have such supportive and loving people in my life.

Through the challenges you learn to build back a positive perspective, day by day. I hope my horrific experiences remind us all to practice gratitude.

I am so grateful to Trevor, my carers and my family for being here for me.

Where would I be without your care and compassion?

Having a pet, my cat Leo, was extremely helpful to my mental state too. It’s comforting when she sleeps curled up beside me for hours. Whilst it feels like not a lot has happened over the past year, I have certainly done a lot of living and experiencing.

I’ve had to find a new way to enjoy doing the things that I love.

How I manage my mindset has changed, with the help of talking with good friends. I have always portrayed myself as being in a battle with cancer, me Vs it, with me being the winner as I reach 65 years of age.

This approach has changed somewhat, as I now recognise cancer to be a part of me, and as part of my life. Rather than fighting against cancer, which is inflammatory and fear driven, I accept it and live with it.a rose garden, but it is easier for me.

In that instance, I learnt to thrive with the adversity, as opposed to living against the adversity. For me, it has worked to quell some of the anxiety and heat in my body. Internal harmony, as opposed to war. It has also seen me take the focus away from me living ‘with cancer’ and allowed me to just focus on ‘living’.

Now let me be clear, as I explain this, life hasn’t all of a sudden become a walk through Regardless of how I try to manage my mindset, living with cancer can really be a roller coaster ride. Through December and January, the burden of cancer became overwhelming. This was attributed to several factors. At the time, I found that I was really feeling run down. I had very little energy and felt spent. In the preceding months I had dropped 20kg. Sure, I had been busy, but it felt concerning. Blood results suggested that my immune system (white blood cells) was at an all-time low. I would have been hospitalised, brain tumour is killer! In their own right, none of these things are an indication of how I am travelling with cancer, however combined, they had me really worried and on a low.

So the high came in May, when I got my results and learnt that my cancer has stabilised!! Best Birthday present ever! Wooo hooo!! When told, I explained to my doctor it was the first time that I had received positive news. It has been a long time coming, but worth the wait. All I need now, is to receive similar or better news from my next MRI results in 3 months time. Bring it on, I say!!

Take care Irma xoxo

(Reproduced with permission from Peace of Mind Foundation: https://www.peaceofmindfoundation.org.au/community-blog/2020/8/17/irmas-journey-a-storyof-inspiration-and-hope) Peace of Mind Foundation is a not for profit organisation created to give support, courage and community to brain cancer patients, their carers, family and loved ones.

AN INTERVIEW WITH IRMA

Irma Shelton is someone whom many in the thalassaemia and sickle cell anaemia community would know from her time working as a patient service assistant (PSA) at the Medical Therapy Unit, Monash Health Clayton, until her brain cancer diagnosis. Because Irma is so special and in the hearts of so many in our community, Sam got in touch with Irma over the phone to see how she was going and to reflect on her time at the MTU. Sam: Hi Irma, you have lots of friends and colleagues that care for you and want to offer support as you go through everything you are facing with cancer. They all want to know how you are going. So, how have you been?

Irma: I’m great. I am currently having an experimental treatment and it’s working fine. The tumour is stable and I’m doing well. Thank you to everyone for their support. I really miss everyone.

Sam: That’s great to hear that you are doing well! Tell me about your time at the MTU, what was your favourite part of working there?

Irma: Oh everything! I loved it all. I worked at Monash for many years. Many of the patients I looked after would spend long days at the hospital and it was my job to make sure they were comfortable. I would get them lunch or a coffee and made sure the unit was clean. I loved interacting with everyone.

Sam: Were there any favourite memories?

Irma: Everything about it! There’s no one thing that was my favourite. The people were amazing, the staff were amazing.

Sam: Do you miss anything from your time there?

Irma: I really miss the interaction and the patients.

Sam: How are you going during the lockdown?

Irma: Hate it! [Laughs] I don’t mind not being outside, but not being able to have visitors is hard. I can still talk with friends over the phone, but it’s not the same.

Sam: Is there anything you are excited about?

Irma: The end of the lockdown!

Sam: You have shown such positivity during your challenge with brain cancer. In the article you said how you changed your mindset from “a battle with cancer” to accepting it and living with it, not allowing fear to drive the way you live. What is some advice you would give to someone who is going through challenges of their own, whatever it is?

Irma: Yes, I learnt to accept what I can’t change and try to be more positive. Counselling really helped me. One advice that I could give is to live one day at a time. Live for today and not tomorrow because tomorrow is not guaranteed.

Sam: That’s great advice, especially during this time of uncertainty. Thank you for chatting with us today. Do you have a final message to all your friends and supporters?

Irma: Thank you for all your support. I miss the unit and I miss you all!

RESEARCH DEVELOPMENTS PROGRESS IN TREATMENT DEVELOPMENT IN BOTH EUROPE AND US ON FOETAL HAEMOGLOBIN BOOSTING THERAPY: IMR-687 The European Commission and US Food and Drug Administration have granted orphan drug designation to a new sickle cell therapy developed by Imara Inc. This designation indicates that the treatment has enough data to back up claims of clinical benefits. It also speeds up the process in which the treatment becomes available in the specified market if approved.

Imara is a pharmaceutical company that specialises in producing therapies for sickle cell anaemia. IMR-687 is administered orally and targets a biochemical pathway in the body that suppresses the production of foetal haemoglobin. Usually only present in foetuses and newborns, foetal haemoglobin is a protein in the red blood cells that carries oxygen in the body much like adult haemoglobin.

Increase in foetal haemoglobin could reduce the symptoms associated with sickle cell anaemia and beta thalassaemia major, which is what IMR-678 hopes to do.

IMR-687 has a long road of clinical studies ahead. It is currently undergoing Phase 2b trials in the US, testing its safety and effectiveness in patients with sickle cell anaemia.

LUSPARTERCEPT APPROVED IN EUROPE Luspartercept (also branded as Reblozyl), already approved by the Food and Drug Administration in the United States, is a red blood cell boosting drug for the treatment of anaemias including beta thalassaemia. Earlier this year it also had the approval of the European Medicine Agency.

Luspartercept interrupts the biochemical pathways that regulate red blood cell maturation and increases red blood cell count.

This is expected to reduce the units of blood required by patients over time.

A long term surveillance study of 336 patients showed that effects were lower in pts patients???? with the most severe disease forms of beta thalassaemia. However, meaningful reductions in transfusion burden were observed across all patients studied.

Sources: Carvalho J. European Commission Grants Orphan Drug Status to Imara’s IMR-687... [Internet]. Sickle Cell Disease News. 2020 [cited 28 September 2020]. Available from: https://sicklecellanemianews.com/2020/08/27/ european-commission-grants-orphan-drug-designation-to-imr-687-for-scd/ 2. Reblozyl - European Medicines Agency [Internet]. European Medicines Agency. 2020 [cited 28 September 2020]. Available from: https://www.ema. europa.eu/en/medicines/human/EPAR/reblozyl Cappellini MD, Viprakasit V, Taher AT, Georgiev P, Kuo KH, Coates T, Voskaridou E, Liew HK, Pazgal-Kobrowski I, Forni GL, Perrotta S. A phase 3 trial of luspatercept in patients with transfusion-dependent β-thalassemia.

New England Journal of Medicine. 2020 Mar 26;382(13):1219-31.

Disclaimer: Thalassaemia and Sickle Cell Australia does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

WHO’S INSPIRING US?

TASCA would like to take this space to highlight some of the exceptional Thalassaemia and Sickle Cell Patients from both around the world and right here in Victoria. Read on to learn more about these exceptional stories.

Revee Agyepong

Hello friends, my name is Revee Agyepong.

I am your typical 28-year-old girl.. besides the fact that on November 09 2017, I had an allogenic stem cell transplant.

My journey started at 2 years old when I was diagnosed with Sickle Cell Anemia.

A few years ago I was at the hardest point in my Sickle Cell journey, no longer responsive to treatment, and ready to give up. Thanks to my sister I was offered the opportunity of a lifetime.. a stem cell transplant that could turn my life around.

Confused and torn between the risks and benefits, I became one of the first adults in Canada to be cured of Sickle Cell Anemia.

I AM OFFICIALLY SICKLE CELL FREE! Stem cell transplant is not an easy road, it’s been a tough time full of stress, pain and tears but it isn’t all bad. My experience has given me a greater appreciation of life. I know my journey has just begun and I have a lot of ups and downs ahead but I am confident that I made it this far for a reason.

A chronic illness should not limit you to what you want to achieve in life, never give up because you never know, your breakthrough might be around the corner.

Many thanks to my older sister for putting her life on hold to fix mine. I guess you could say I’m getting a second chance at life but this time I get to do it pain-free!"

Thanks, Revée Find out more and keep up with Revee on instagram, @mysickledcells

Gina Nikodemou

Growing up, I remember taking a day off primary school once a month to spend the day at Royal Children's Hospital so my cousin could get her blood transfusion. I was pulled out of class to hold her hand while the district nurse came to school to give her a blood test (crossmatch).

This test matched my cousin’s blood to a suitable donor. Every night she prepared her Desferral treatment and I would watch her inject the butterfly into her belly. This treatment is an iron chelator and assists with lowering your ferritin levels due to the constant blood That’s exactly what we did. Anthea is 21 now, is constantly anaemic and has had transfusions.

4 iron infusions in the last 5 years. In Little did I know the effect of being a every appointment with the haematology Thalassaemia carrier and the impact doctors, they constantly tell her that when she decides to conceive children, she it had when I met my husband, also needs to be aware of whether or not her a carrier, and what that meant for the partner is a carrier. Thankfully her partner future of having children. and my son’s partner are not carriers.

In 1990, my husband and I were the first couple at Monash Medical Centre to undergo extensive Thalassaemia DNA genetic testing, which involved getting blood samples from our siblings for analysis.

With all the data Monash required I was the first to have Chorionic Vili Sampling at 11 weeks pregnant, bringing the chance of miscarriage down from the Amniocentesis testing at 14 -16 weeks which had a very high miscarriage rate.

Genetically, two Thalassaemia minors have a 50 percent chance in each pregnancy to pass on the Thalassaemia Minor gene, 25 percent chance of NO Thalassaemia carrier and 25 percent chance to carry the Thalassaemia MAJOR gene.

My eldest son, who is a carrier, is 28 and has never had iron issues. It so important to raise awareness of this genetic blood disorder. People can carry the gene and have no effects at all.

I never knew growing up I was carrying it. I only found out because in Cyprus a priest won’t marry couples if they both carry the gene. It’s a compulsory blood test before marriage. Yes, we met and married in Cyprus. The priest was my mum's uncle and he performed the ceremony.

I would love to encourage people to get tested for Thalassaemia in preparation for parenthood. In the 70's and 80's, Thalassaemia was dominant within the Cypriot, Greek and Italian communities.

Now there is a prevalence within the Indian, African and Asian communities.

As a pathology nurse myself, I’ve had a few patients getting tested for With a couple of hurdles over the years I Thalassaemia. They are generally had my children, 2 boys and a girl. Two unaware of the condition, it’s implications of them carry the gene and one doesn’t. on them and/or their children.

With the arrival of my last, a girl, the TASCA is doing an amazing job in raising professor of the Thalassaemia unit asked awareness, which is why my Facebook to see her as a newborn and instructed birthday fundraiser this year was aimed us that when she began her menstrual at helping equip the new unit at Monash Medical Centre. cycle he wanted to see her again.

Do you have someone you would like to nominate to be featured in next quarter’s TASCA newsletter?

Send your nomination through to info@tasca.org.au

TASCA Online #TASCAForMentalHealth

Behind each battle with chronic illness, can lie a hidden battle with mental health.

This month TASCA has taken their plan to obtain mental health support digital, creating a social media campaign to boost awareness of the needs of people living with a chronic condition. A variety of posts have been created to support the work that TASCA has already been doing, including direct communication with parliamentary individuals to highlight awareness of the issue. Although each step we take in this endeavor is small, they are all moving us forward toward obtaining the support needed and deserved by TASCA members and friends alike.

AROUND AUSTRALIA SUPPORT IN QUEENSLAND

LIVEWIRE FOR TEENS

TASCA has commenced consultation with patients and parents in Queensland to expand our support. To increase the support provided, we are looking to start a working group with our members in Queensland to encourage activity in the state.

Our main priorities are: • • • • •

Support for children, young people and families Improving experience of attending hospital for children and families Connecting patients and families together Awareness raising Improving communication with treatment centres and clinicians

If you are a patient, parent or carer living in Queensland, we would like to get in touch with you to see what your needs are. We also want to connect patients in the state through social gatherings.

Do you know any teens who may be interested in a fun, safe online community?

Livewire is a free online community for young people aged 12 - 20 (and siblings too) living with a serious illness, chronic health condition or disability.

Livewire is a safe, supportive and fun space that hosts a fully moderated chatroom (open 12pm-12am AEST, 7 days a week), competitions, live streaming, an active newsfeed, special events and regular visits from celebrity guests.

To find out more or to create an account visit www.livewire.org.au or check out their Instagram: @starlight_livewire

WWW.TASCA.ORG.AU

THALNSW UPDATE

NSW Parliamentary Inquiry into Health Services in South Western Sydney Advocacy has always been on our agenda and continues in 2020 with our president George Houssos who spoke alongside Dr Anthony Brown of Health Consumers NSW at the NSW Parliamentary Inquiry into Health Services in South Western Sydney hearing in July.

George addressed issues that South Western Sydney Local Health District thalassaemia and sickle cell patients face in accessing comprehensive haematology treatments and discussed the need for greater resources and support at the Liverpool Hospital treatment centre.

If you have thoughts, feedback or questions on haemoglobinopathy treatments in this area, please reach out to Coordinator@

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TASCA4 TASCA 4KIDS PHOTOGRAPHY SCAVENGER HUNT

Can you find 9 things that meet these descriptions?

Take a walk through your neighbourhood with your parents and along the way take photos of items that meet these descriptions. Once you’ve got them all, add them to a grid like ours so you can post it online!

Twisted

Loud

That flies

That makes you smile

Blue

(careful not to touch)!

Round

Bright

Decorate a Mask!

To help protect us all, the Victorian Government now requires everyone over the age of 12 to wear a mask out in public. But that doesn't have to be a bad thing! Masks can come in all sorts of colours and patterns, why don't you use your imagination to design your dream mask here. Colour it in with any colour and pattern you can dream of.

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ASk CA p T s n wi mAum oerlpdyaodu to

Want to

can h hunt if they enger v a c s r u either post yo rated mask on ing deco m, tagg a r g grid or a t s n some ok or I be sent ld Facebo st u o c u yo ed to po d w n o a ll a A t C o TAS ou’re n Just dies! If y at’s okay too. o o g A C TAS , th s at l media ugh to u to socia r pictures thro u u email yo o@tasca.org.a inf

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Sharp

Yourself in your mask