My life as a haemophiliac

I was diagnosed a severe haemophiliac at birth in 1953 in a Paarl hospital. I was tested immediately because my eldest brother, whom I never knew, had died of an internal bleed in then Palestine, now Israel. This was while my father was serving in the allied forces during World War II. My newlywed parents had fled from Poland at the onset of World War II and ended up in the Middle East where my three elder sisters were born. After the War, the family  travelled by ship down the east coast of Africa, landing in Durban in 1947 to start a new life. 

I almost bled to death soon after birth because the doctor insisted that I should be circumcised, thinking that Vitamin K would prevent bleeding. I bled for two weeks and still have the scars on my ankles to show for it. Then and during childhood, I was treated with whole blood. Later, while growing up on a small holding in Durbanville, I was treated with Fresh Frozen Plasma (FFP) and spent many weeks as an in-patient at Groote Schuur Hospital in Cape Town. In my teenage years, a breakthrough was made with the advent of concentrated clotting products, first wet cryo-precipitate and later dried factor which allowed for home treatment.

Despite these advances, I had many internal bleeds into my joints and in mid-life had both my knees and left ankle replaced, and my right ankle fused. After retirement I had my left elbow replaced so now I just need my head replaced! 

The world was beginning to come to terms with the new AIDS epidemic in 1985, and I was contemplating marriage when I was diagnosed HIV positive as a result of receiving an infected blood product.  I was told that I would not live long and as a result did not marry or have children. Here I am 40 years later living a relatively normal life.   

Having grown up during apartheid I was fortunate to have had the benefit of access to a good education and world class medical treatment in contrast to many others. For that I am grateful.   

I often think of my life as a hand that I have been dealt in a game of cards.  I have been dealt with some poor cards but also some good ones.  Life depends on how you play the hand.  

 

Jan Glazewski

 

Footnote: Jan has written a book about his life – titled Blood and Silver – should you want more information about the book and where you can obtain a copy, please contact MedicAlert and we will pass on the contact details.

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WORLD HEMOPHILIA DAY 17th April 2022

 

Luan Van Heerden was diagnosed with Severe Haemophilia A at the age of 1. Now, 18 years later, he has matriculated and busy with his 1st year of University, studying Sustainable Development.

Asked about the impact that his diagnosis had on his life as a child, he told me that he never saw it as “What he could not do” but as “What I must see coming – I must look forward, a few steps ahead, before tackling something”. He would always make an effort to take part in activities, and he says his primary school friends often forgot that he had Haemophilia!

Asked about sport (which for haemophiliacs is a major challenge due to the risk of being injured), he says he took part in practices in sports such as rugby and water polo.

However, Boat racing became a passion as he grew older, as his father had taken part in this sport as he grew up, and Luan (along with his mom) were the “pit crew”. He was 3 years old when his father introduced him to the boat, and over the years spent many hours out on the boat practising with his father.

Luan obtained his Skipper’s licence last year, and the scene was set – he would crew with his father in his last race, as his father was retiring from the sport.

These Trans Atlantic/Trans Agulhas races are done in Inflatable boats (rubber ducks) – one of the hardest water racing disciplines. Luan tells us that one crew member is at the back handling the throttle and steering of the boat, and the other is at the front to balance the boat – this requires a lot of moving around. Of course, he was the man at the front!

Medicating every day, he managed his Haemophilia risk – he says although sometimes he was stiff he pushed through – “Once you start racing you forget about the pain”

Luan has had a few health challenges due to his Haemophilia, but nothing keeps him back from living life to the full.

MedicAlert salutes you for your courage, and wishes you all the best for your future.

 

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WORLD HEMOPHILIA DAY 17th April 2021

PRESS RELEASE April 2021
Whether you are a patient, a family member or caregiver, a corporate partner, a volunteer, or a healthcare provider. With the pandemic consuming all the news, health resources and focus, we want to encourage you to help increase the awareness of inherited bleeding disorders and the need to access adequate care, everywhere in the world no matter where you live. We are all still relevant as we journey the pandemic.

Our community is made up of a great diversity of people from patients and their families, to carers, physicians and researchers. Each of whom has been affected by the pandemic in a different way. We need to continue providing support to these people now, and in the future once the pandemic has passed. The world has changed greatly over the last year, but one thing has not. We are still in this together, and we will always be stronger together as a community in our shared vision of “Treatment for All”.

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