This is the third and final part of the piece I submitted to the Independent newspaper for their Your Blood Supplement. Only a tiny bit was included in the final piece and you can see it here:
Your Blood – Part 3
I found out just before I went to university that I had contracted Hepatitis C through contaminated blood products. Not really understanding what it meant at that stage I tried to forget about it and enjoy my university life.
I spent 6 weeks after university travelling around Chile with my best friend and though it was difficult to carry my clotting factor everywhere, when I had a massive nosebleed because of the altitude in the Andes it came in very handy.
Since then I have spent a lot of time dealing with the Hepatitis C, having two lots of treatment for it which made me very ill, and which I’m still suffering the after effects of 10 years later. The treatment did eradicate the Hepatitis, for which I’m very grateful, but I have been left with long term chronic fatigue which has had a massive impact on my life – much more so than my bleeding disorder. I’ve always said I can live well with a severe bleeding disorder, and I do day to day, but having a virus given to me and this taking away my ability to work and to live normally and have children is devastating.
I’m now 37 and bleeding-wise I am pretty stable. I’m on high dose hormone pills to control my periods still, which suits me. The alternatives for someone with my condition would be an endometrial ablation which has success in many cases, or a hysterectomy which used to be the treatment offered to young ladies with von Willebrands but today is generally a last resort. I have frequent gum bleeds which can be apropos of nothing or which can be caused by a crisp, or an apple, or a banana even. My nose bleeds are less frequent and I only have them when I have a cold or when I fly anywhere. I still get occasional joint and muscle bleeds and bad bruising at the drop of a hat. I inject myself anywhere from once a fortnight to twice a day, depending on the nature of my bleed. My attitude is that I get on with things and don’t worry because my mum does that for me 😉
I am lucky in that my condition was diagnosed when I was very young and was well managed whilst I was growing up. If I had not been diagnosed I’m sure that my life would have been extremely difficult and potentially hazardous. The problem that we still face is that von Willebrand’s disease is not a recognised and well known condition, in the medical profession as well as the public – even though in its mild form it affects 1% of the population. Many of those 1% are undiagnosed and may just think that easily bruising and nosebleeds run in their family. In fact diagnosis can lead to careful long term monitoring, access to medications that can make life easier and proper management of any surgery that may be required. The knowledge of those involved in the care of people with this condition is increasing all the time.
For the one in a million like me who have a severe form of the condition, nowadays the treatment is usually prophylactic – that means regular preventative injections of clotting factor. This is instead of injections after the event and can prevent bleeding episodes or tone them down, and will prevent joint damage such as the arthritis I have in my ankles. The off-putting thing about this at the moment is that our clotting factor is still manufactured from heat treated human blood products and therefore there is a level of risk as such. Whilst haemophiliacs are mainly treated by manufactured, synthetic (recombinant) blood products, because there are smaller numbers of us von Willebrands the development of recombinant products for us has been slower. I believe however we are getting there and for me this will be a great step forward in the next few years. I also read with interest the recent research that is being done on gene therapy and the hope that one day this could provide a complete cure for a genetic blood condition like mine.