Peter Verveniotis forges a full life despite battle with Thalassaemia

Originally published by Neos Kosmos on 11 October 2021.

As chair of the not-for-profit Thalassaemia and Sickle Cell Australia (TASCA), Peter Verveniotis knows a thing or two about the chronic genetic disorders that his organisation is dedicated to offering support, raising awareness and encouraging the public to donate blood to help those affected to manage their conditions.

Mr Verveniotis has Thalassaemia Major (also known as Mediterranean Anaemia) and attends Monash Medical Centre every three weeks to receive three bags of blood. Like anaemia, it is a genetic condition for which there is no cure but it is possible to live a relatively normal life through consistent treatments.

“Each time I attend, I receive three bags of blood and am reviewed by a medical practitioner (haematology resident). Every three months I am reviewed by the Haematology consultant. I also see specialised consultants annually such as endocrine and cardiac services,” Mr Verveniotis said.

” Living with Thalassaemia is not a simple undertaking, as many who live with the condition struggle with the treatment. … I have had to learn the hard way to accept my condition and work hard to keep myself healthy.”

Mr Verveniotis is an early parenting practitioner with the Maternal and Child Health (MCH) Services and is an early learning centre administrator. He is also studying for a Bachelor degree in Early Childhood Education. Along with his role as chair of TASCA, he is also an consumer advisor for the Monash Health Blood Committee.

“As a child my instinct was to rebel, I didn’t enjoy chelating (iron removal treatment) and attending my many medical appointments such as echocardiograms, Magnetic Resonance Imaging (MRI) scans of the heart, bone-density tests, ultrasounds of the spleen and liver, dental and specialised bone clinics.

He said one of the reasons he joined TASCA as a general committee member five years ago was to support and advocate for patients with genetic blood disorders, raise public awareness and improve the conditions of treatment in Melbourne hospitals.

He draws on his own experience to drive the message on.

“This is a personal story I tell in my mentoring of the younger patients and the community. I have lived it, so I understand it,” Mr Verveniotis said.

He recounts the embarrassment he felt every time he was called on the school public address system to go to the school office where the district nurse awaited him to take samples of his blood to match with available donor blood. The nurse would even visit him at home in the evening help prepare and administer his injections.

“Unlike those days, we now attend a pathology centre to perform this vital procedure. For some, this is very inconvenient, especially when the blood samples are misplaced, lost or completed incorrectly.”

One of the side effects of repeated blood transfusion is an overload of iron in the blood that is overcome with chelation therapy. For some the medication required can be taken orally but that does not work for everyone.

“For me, this involves infusing Desferrioxamine (an iron chelator drug) subcutaneously through a small butterfly needle for 10 hours overnight using an infuser, five times a week.”

Sickle cell anaemia most commonly affects people from Southern European, African, Middle Eastern and Asian backgrounds and is one of the most common genetic traits in the world. A simple blood test will show if couples are at risk of having a child with sickle cell anaemia. Couples are at risk if they are both carriers of a sickle cell or thalassaemia trait.

His older brother, who also inherited thalassaemia, died of a cardiac arrest when he was just 25.

“My parents didn’t know that they were carriers when they got married. If they had been married in Greece or Cyprus, a blood test would have been mandatory, and the risks would have been known. As such, when my brother was diagnosed it was a shock to them. He was five years older than me, however, he didn’t start chelating until he was in his early teens. The iron overload from the blood transfusions from birth to the age of 10 caused irreparable damage to his organs.”

His brother was a guide and mentor to his younger sibling. They shared the same blood type but not the same fate.

“It was just the luck of the draw that he contracted Hepatitis C and I didn’t. This was common amongst our community and many thalassaemia patients are still living with the blood-borne viruses contracted through contaminated blood supply in the 1980s. The stigma of having a blood-borne virus further adds to both physical and emotional issues associated with having a genetic blood disorder.”

Another twist of fate was that their sister did not inherit thalassaemia and was able to start her own family and neither of her two children have inherited the disorder.

His brother’s death was a massive blow to himself and to his family. The family rallied when Mr Vervaniotis health began to fail.

“I let my health suffer and I was not strictly following my treatment regimen. As a consequence, the iron built up in my organs, in particular, my heart. Before long, I was admitted to the hospital’s coronary care unit as I was near congestive heart failure with a severely dilated heart.”

He was visited by Professor Don Bowden who was the head of Thalassaemia Services Victoria and the time and he was brutally honest with the young man.

“He told my father who was caring for me at the time that my chances of survival were no better than 50/50. My only option was to chelate. I chelated 24/7 for many months on end to try to reverse the damage that had been done.

“I am lucky. My health improved. To this day, medical staff from the Medical Infusion Unit at Monash where I have my treatment use me as an example to medical students, junior staff and even other patients of the importance of compliance with treatment.”

Becoming a member of TASCA was a way of driving that message on.

“Our membership is growing. One of the oldest members is a patient who is 70 years of age which I truly admire. The youngest member is six. To think that there are children still passing away from this condition and who struggle to receive basic treatment is heartbreaking.

“For this reason, TASCA’s work in promoting genetic testing, educating the broader community and advocating for the needs of patients, their families and carers is of such importance and value,” said Mr Verveniotis.

“TASCA is grateful for the ongoing support of the community around Victoria and Australia.

TASCA Newsletter (Spring 2021)

The latest TASCA newsletter is out now. 

Contents:

  • COVID-19 Vaccination Information 
  • AGM Oct 28
  • Committee and Staff Updates
  • TASCA Small Grants Program
  • TIF e-Academy
  • Research into Beta Thalassaemia
  • Hepatitis C Vaccination?
  • R U OK? Day
  • TASCA Supporters
  • “IRON BOY” by Arthur Bozikas
  • TASCA 4 Kids Page

Want a hard copy? Let us know by sending a request through email.

You can also download a PDF here.

View previous newsletters here.

New Grant Now Available

The TASCA Small Grant in Honour Sotirios Katakouzinos & Maria Kastoras is now available and open for applications from TASCA members.

of The TASCA Small Grants program is intended to improve the quality of life and wellbeing of patients through a small grant to fund equipment or other non-perishables for treatment centres.

Who is eligible to apply? 

  • Haemoglobin disorder patient/parent/carer. 
  • Current financial TASCA members. 
  • A social worker on behalf of an individual patient/parent/carer. 
  • Applicant must reside in Australia 

What may be funded? 

  • Entertainment systems for treatment centres. 
  • Medical equipment unable to be funded by hospitals. 
  • Furnishings (small). 
  • Other non-consumable items that would improve the comfort and wellbeing of patients while receiving treatment. 

What will not be funded? 

  • Consumable items (such as food or drink). 
  • Personal use items (i.e. equipment that will only benefit one person during the lifespan of the product). 
  • Standard fees associated with receiving treatment (e.g. parking) 

What is the maximum value of the grant?  

TASCA will fund equipment to the value of $750.

 

COVID-19 Vaccination Information for Thalassaemia and Sickle Cell Anaemia

Produced by clinicians from Monash Health, Royal Melbourne Hospital and Western Health.

Context 

COVID 19 is a highly contagious virus that has high hospitalisation rates as well as mortality, particularly for those with underlying medical conditions which make them more vulnerable. Both sickle cell and thalassaemia have been designated as vulnerable conditions in the context of risk for hospitalisation and death from COVID. Vaccines are the best available defence against severe COVID 19 disease and death. 

The Thalassaemia International Federation has categorized “highest risk” and “high risk” thalassaemia with any two of the following: 

  • Over the age of 50 years 
  • Transfusion dependent 
  • Non- transfused with haemoglobin less than 70g/L for more than two years 
  • Receiving iron chelation therapy 
  • Splenectomised persons or persons with asplenia 
  • Other medical conditions – diabetes, heart disease, lung disease 

Therefore, all international advocacy groups for haemoglobinopathies including Thalassaemia  International Federation (TIF), the American Society of Hematology (ASH) and Cooleys Anaemia Foundation strongly recommended that all haemoglobinopathy patients be vaccinated against COVID-19.

COVID-19 Vaccines 

There are currently 2 types of vaccines available in Australia; MRNA vaccines (Pfizer BioNTech COVID 19) and viral vector vaccines which have been modified so they cannot grow in humans (AstraZeneca). Both vaccines are extremely effective at reducing hospitalisation and severe disease and death. This has been demonstrated in large clinical trials involving tens of thousands of participants. Additionally, both vaccines are extremely safe and have been given to millions of people globally with overwhelmingly very limited severe side effects. 

Currently, anyone aged over 12 years is eligible for COVID-19 immunization. 

Is COVID-19 immunization recommended for people with thalassaemia? 

COVID-19 vaccines are NOT contraindicated and strongly encouraged for adults and youth, including those who have had COVID-19 infection. Parents, carers and family members of those with thalassaemia and sickle cell also need to be vaccinated to avoid passing it on to affected family members. 

As you are aware, Victoria is currently experiencing large numbers of COVID 19 cases. Indeed, hospitalisation rate, ICU admissions and numbers of patients requiring ventilator support are increasing. It is therefore imperative that you as well as your family and friends get vaccinated as soon as possible. 

It is the most important health measure you can take to protect yourself, your family and your community from severe illness and death from COVID-19. 

World Hepatitis Day 2021- Hep Can’t Wait!

World Hepatitis Day held on 28 July is an opportunity to step up national and international efforts on hepatitis.

Although preventative measures such as donor and blood screening have increased blood safety and have virtually removed the risk of transfusion-transmitted infections in Australia, chronic hepatitis remains a concern in the genetic haemoglobin disorder community in Australia due to past infection and internationally due to still inadequate blood safety measures.

This World Hepatitis Day, we support the global call to eliminate hepatitis especially for those with genetic haemoglobin disorders. 

Australia can’t wait to eliminate hepatitis!

Learn more at Australia’s World Hepatitis Day official website.

 

Hepatitis

Hepatitis B and hepatitis C are viruses that cause damage to your liver. They can be chronic, which means you could have them your whole life. Without treatment, they can lead to liver disease or liver cancer.

To see the latest statistics about hepatitis B and hepatitis C in Australia and why Australia can’t wait to eliminate hepatitis you can down load the World Hepatitis Day 2021 Factsheet using the button below.

Hepatitis B

In Australia, approximately 220,000 people are living with lifelong Hepatitis B and many are unaware they have the virus.

There is a safe and effective vaccine to protect you against getting hep B.

You can get treatment to manage chronic hepatitis B but not cure it.

Hepatitis C

In Australia, approximately 120,000 people are still living with chronic hepatitis C at the end of 2019 and many are unaware they have the virus or have not been fully diagnosed.

There is no vaccine to protect against hepatitis C, but there is an effective cure. The medicines known as direct-acting antivirals (or DAAs) are easy to take with as little as one tablet a day, no injections and most people experience few to no side effects.

Most people can get a prescription from their GP. They are low cost for people who have a Medicare Card.


Source: Hepatitis Australia

2021 Hepatitis Australia Factsheet

This document provides some useful statistics and information for World Hepatitis Day communications, including some new data not previously available in the public domain.

TASCA Newsletter (Winter 2021)

The latest TASCA newsletter is out now. 

Contents:

  • Light Up Australia
  • AGM Announcement
  • Raffle Winners
  • ITD2021
  • Thalassaemia International Federation Update
  • Who’s Inspiring Us?
  • A Tribute to Tim Vine 
  • What’s TASCA Been Up To?
  • TASCA 4 Kids Page

Want a hard copy? Let us know by sending a request through email.

You can also download a PDF here.

View previous newsletters here.

New TIF Resources: Thalassaemia Guidelines and COVID-19 Vaccination Guide

It’s Here: The 4th Edition of TIF Guidelines for The Management of TDT 

TIF, its Board of Directors and its International Scientific Advisory Board proudly present the 4th Edition of the Federation’s most prestigious and renowned publication, the TIF Guidelines for The Management of Transfusion- Dependent Thalassaemia (TDT).

Since 1999, when the very first edition was originally released as part of the Federation’s Educational Programme, the TIF Guidelines have been adopted and used extensively by academics, researchers and healthcare professionals all over the world as the only evidence-based reference text concerning the treatment of patients with TDT.

The newly launched edition includes brand new chapters on the recently approved modalities of patient treatment, the value of patient engagement at the decision-making level, the Reference Centres’ contribution to patient care, and much more.

We are confident that these Guidelines will offer once again valuable information to all allied physicians involved in the treatment of patients with this blood disorder and will consequently benefit the global thalassaemia community many times over. 

The June Update: TIF’s Guide on COVID-19 Vaccinations and Therapeutic Drugs 

As vaccination rates are slowing in the US and Europe, the spread of the Delta coronavirus variant causes growing concerns worldwide with health experts predicting the highly infectious strain to soon account for the majority of COVID-19 cases globally.

In our latest Guide on ‘COVID-19 Vaccinations and Therapeutic Drugs’, we have gathered the latest news, updates, and the information you need about: 

  • the current status of COVID-19 vaccinations in major countries and regions  
  • the clinical development and production of COVID-19 vaccines 
  • a breakdown of differences between the Pfizer, Moderna, AstraZeneca, and Johnson & Johnson COVID-19 vaccines 
  • the COVID-19 variants and the existing vaccines’ effectiveness 
  • the COVID-19 vaccines in Phase 3 clinical trials 

TASCA COMPETITION – 1 of 2 Sooshi Mango Double Passes to Win!

Con the Fruiterer and Acropolis Now combined and on steroids is the only way to describe this Australian comedy troupe made up of two brothers and a close friend, who have gained a massive following with their irreverent antics online and on stage.

We are giving you the chance to win a double pass to see “Sooshi Mango – OFF THE BOAT”, their brand new 2-hour live show on Sunday 29th August, 5:30 pm at the Rod Laver Arena.

If you are looking for a night out filled with belly-aching laughter (aren’t we all?), then send us your most creative and funniest impersonation of a cherished family member in the form of a 15 -30 second skit or musical routine. For inspiration check out: www.sooshimango.com

Share with us by uploading to www.tasca.org.au/sooshimango post to Facebook/Instagram with #TASCAComp

Entries close at 11:59pm, Thursday 29th July 2021.

Winners will be announced on Thursday 5th August 2021.

Terms and Conditions:

  1. All entrants must be TASCA members (membership is currently free, see our website for details).
  2. Winners must be available to attend the Sooshi Mango performance on Sunday 29th August, 5:30pm at the Rod laver Arena.
  3. All tickets for this competition are not redeemable or exchanged for cash.
  4. This event may be cancelled at short notice due to unforeseen circumstances, such as power failure, natural disaster, COVID- 19 restrictions.

Submit your video!

TASCA on Southern FM

Sam, TASCA’s Health Promotion Officer, sat down with Angela Randall from The Kiwanis Club of Moorabbin and Colin Tyrus from 88.3 Southern FM to chat about genetic haemoglobin disorders and TASCA’s relationship with the Kiwanians on awareness raising and the “Big Green Shed”.

Listen to programs like The Community Block with Colin Tyrus and more on 88.3FM or online.

Recorded on Tuesday 18 May 2021.

World Sickle Cell Day Light Up

In recognition of World Sickle Cell Day on 19th June, Thalassaemia and Sickle Cell Australia has organised the 2nd annual light up of landmarks in Australia. 

 

Share your photo with #LightUpForSickleCell to raise awareness!

 

This year, the following buildings will light up:

 
June 17th
  • Trafalgar Bridge and Perth Council House, WA 
June 18th
  • Bolte Bridge, VIC
June 19th
  • Telstra Tower, ACT
  • Embassy of Greece in Canberra, ACT
  • The Bell Tower, Perth, WA 
  • Palmerston Water Tower and Frances Drive Light Pole, Palmerston NT 
  • Monash Park Tree and Mooroopna Water Towers, VIC
  • Launceston Town Hall,  TAS
  • Adelaide Town Hall Balcony, SA 
  • Story Bridge, Victoria Bridge and the Reddacliff Place sculptures, QLD 
  • Kurilpa Bridge, QLD 
  • Newcastle Clock Tower, NSW
 We want to thank all our light up partners that made this possible! 
  • Adelaide City Council
  • Brisbane City Council
  • City of Launceston
  • City of Newcastle
  • City of Palmerston
  • Embassy of Greece in Canberra
  • Greater Shepparton City Council
  • Telstra
  • The Bell Tower
  • Transurban
  • Queensland Department of Energy and Public Works