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This website is intended for carers and patients living with haemophilia.
An active, haemophilia advocate, gives his perspective
What is your experience of haemophilia?
I was born in 1941 with severe haemophilia type A. There was no previous haemophilia in my family so my condition was caused by a new genetic mutation that was diagnosed during a small operation following which I nearly bled to death.
What is your first memory of haemophilia?
When I was diagnosed there was virtually no treatment for haemophilia apart from whole blood and even this was hampered by the lack of knowledge of the different blood groups. I remember that needles were not like those used today so the doctor would have to cut into a baby's veins to try to infuse whole blood in that way.
How did it affect the way you grew-up?
In the early years, I was treated with rest and ice packs and I spent a lot of time laid up in bed. I had to make constant trips to hospital and as a result of my frequent bleeds my joints became damaged. As I got older, I was treated at a dedicated haemophilia centre where there were also many other boys with haemophilia. By this stage treatment had moved to cryoprecipitate, another step forward, which continued until the early seventies. Then one day while at work I had a bleed in a back muscle that became incredibly painful so I went into hospital and the Sister arrived on the ward with a tiny syringe, which turned out to be the first factor VIII concentrate.
Is your treatment easy to manage?
Yes, I think I am now on the best possible treatment, recombinant clotting factor and my clotting factor is provided to me by home delivery. I also have a prophylactic dose twice a week which I find to be effective in stopping my break through bleeds.
What has been the greatest challenge of living with haemophilia?
The tragedy was that most of the early batches of factor VIII were infected with Hepatitis. In fact I received a phone call a couple of weeks after an injection to ask if I was feeling alright. I had contracted Hepatitis. As there were no modern treatments for Hepatitis I was treated with steroids for several years, during which time my liver was badly inflamed. My steroid treatment continued for about 10 years using smaller and smaller doses and eventually I was weaned off them and continued my treatment with refined factor VIII concentrates.
In addition, there were concerns about HIV and many of the patients who were treated with me began to get sick and I also had to have my blood tested. Very slowly many of my friends with haemophilia began to contract the disease and no one realised the extent of what was happening at the time or what the eventual outcome would be.
What has been your proudest moment or most rewarding experience?
I think the most rewarding experiences I have had personally have been related to my gliding. One was definitely the first time that I flew my glider solo. I felt a sense of nervous anticipation when my instructor told me that I could do the next flight on my own. I had been learning for about a year by then so I was ready and excited and the feeling you get when you are up in the glider on your own is indescribable. Then after about five more years I got my licence to be an instructor which was also a really special moment.
What are your hopes for the future of haemophilia care?
My hope for the future of haemophilia care in this country is that everyone is registered with a Haemophilia Comprehensive Care Centre and that they receive treatment that meets the specifications set out in the National Service Specification devised by the Haemophilia Alliance. This document has been reviewed by ministers at the Department of Health and should be the basis by which everyone with haemophilia receives treatment with recombinant concentrates as required.