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
