Hamish & Tom, Australia
- Haemophilia B
all kids with haemophilia would aim high and reach their dream...
In the words of Edwina, their mother
I knew there was a risk I was a carrier of haemophilia – my brother was diagnosed with it when he was a baby. And within two days of the twins’ birth it was known that they both had haemophilia too.
Tom had his first bleed when he was one year old – they say that the first year of life for a haemophiliac is the ‘honeymoon period’ as bleeds very rarely occur until they begin to start moving around more. In the early years Hamish had many more bleeds than Tom, although they were only what I call the ‘garden variety’ – ankles, knees, shoulders and elbows – and he has never had a life threatening bleed; Tom has had five or six.
To make life even more complicated, we discovered that Tom and Hamish had a condition found in only about 15 percent of haemophiliacs – their bodies made antibodies to the missing blood clotting factor (Factor IX), making them immune to traditional means of treatment. My brother did not have that problem. He suffered, but he was treatable…
Back in 1991, out of frustration and desperation, I found specialists in Sweden who had developed an immune tolerance procedure – called the Malmo Protocol – for treating haemophiliacs with antibodies. So I quit my job and got a grant from the Australian government to take Tom and Hamish there. They both went through this procedure, which should remove the antibodies and allow them to take coagulation Factor IX products as normal haemophilia B patients do. Hamish’s body responded well. Tom’s did not. It seems so unfair to have identical twins and then undergo a procedure that works for one and not the other. It has been a tough pill to swallow.
The Malmo protocol failed four times for Tom. I then heard of a drug called NovoSeven® that could help Tom and, feeling frustrated and desperate once again, I phoned Novo Nordisk and spoke to Ulla Hedner, the professor who pioneered the development of this drug.
Ulla has been an incredible friend over the last nine years while we lived in Sweden – by sheer coincidence we bought the house next to hers, and she has always been there for us. For example, last year Tom was diagnosed as an epileptic – just what we all needed! He had lost consciousness at a school disco and my initial worry was he had experienced a head bleed. The first person I called for advice was Ulla! I have found, through my personal experience, that Novo Nordisk can be very supportive.
This support was reinforced in 1999 when Tom and I travelled to Chapel Hill in North Carolina. We went so Tom could undergo a non-surgical procedure under the coverage of NovoSeven®. Tom had been in a wheelchair for 2 years and after 3 months of intense physiotherapy and treatment (with daily injections of NovoSeven®), he is now walking and has been ever since!!! Thanks to Novo Nordisk being all over the world, an Australian, living in Sweden, was able to use a Danish product in the United States.
Last summer we moved back to Australia, as I really wanted the boys to experience some childhood in their home country. They can now go to the beach and have the independence that they want. I worry like any other mother does, but they are now old enough to make their own decisions – they may not always be the right decisions but they have to take responsibility for themselves. We keep NovoSeven® in the fridge in our house so that if they get a bleed they can quickly treat themselves. In those early years we spent so much time in the casualty department waiting for someone to do an intravenous injection. And of course the quicker you treat a bleed the better the result – long delays can make the difference between Tom not being able to walk for two weeks rather than two days. I wanted both boys to be able to look after themselves, so they could be truly independent of doctors, nurses and me!!! They have been self-treating since they were 8 years old and are better at doing needles than they are at brushing their teeth!
I would love to see more children with haemophilia have the autonomy my children have – so that if they get a bleed in school they can treat themselves and go back to class, rather than waste the entire day getting to hospital and waiting for treatment. Home therapy is a great passion of mine – there is no reason why these kids can’t have the autonomy and independence Tom and Hamish now have.
