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haemophilia & hiv - my story


I was asked recently if I would like to write an article for @TVPS a newsletter produced by Thames Valley Positive Support an HIV charity based in Berkshire, as a member and for someone in my situation, how I came to be living with this problem and what it means to me. I was born affected with the genetically inherited medical condition Haemophilia. Many people have heard of it but what actually is it? There are variations, but the basic problem is lacking the ability to clot blood. What I suffer from is Haemophilia A. This means that in practical terms without treatment, you would potentially bleed to death internally or externally. There are levels of severity from mild to severe; most people have a factor level (this is the percentage of clotting factor) of between 75 to 85 percent. Anything less than 12 percent is classed as severe. I have less than one percent, as low as you can go! Apart from a fatality, the main effect is constant injuries or bleeds into muscle and joints, and with the bleeds into joints there is the secondary damage that occurs, a form of arthritis. Over time this leads to immobility in that joint.

So what has this got to do with HIV?

The treatment for this condition involves injecting clotting agent intravenously. Originally, there was only whole blood transfusion available for the most severe life threatening injuries, but then in the late sixties, the time that I was born, a revolution happened in fractionalising blood into parts. One of these parts was the clotting agent that I need. The first product was called Cryoprecipitate and came from only a few donations of blood. The next big leap forward, freeze dried concentrate known as Factor Vlll, was taken from many blood donors. For one batch there would be as many as 1500 donors. This is where HIV comes into the picture. Because of the number used, anything unknown in the donation process could infect a large amount of treatment, including HIV in the UK.

HIV was not present in the treatment, but because at the time we were not self sufficient it was brought in from the USA, which exposed anyone in this country using it. Just over 1,000 people were open to this infection and only approximately 400 of those originally infected remain alive. But since the mid-eighties the treatment has been protected against HIV and other problems, so any children born after the mid-eighties at least do not have to deal with HIV within any treatment they receive. That's the explanation, but what is it actually like for someone to be living with this lot. Because of the severity of my condition, I've had a lot of injuries.

How many injuries?

Roughly 3,500 injections over my life, almost all for injuries, although a proportion of them to prevent damage (bleeding). I'm now 35 and I was 10 months old when I had my first dose. The first hospital that cared for me was Hammersmith Hospital. By the age of 5 I'd spent about a third of my life in and out of hospital, that meant a lot of trips in the ambulance up the M4.  For infants it's particularly difficult to administer intravenous treatment so they tend to sedate you first. In a year, I can lose around 90 days to bleeds into joints or muscle. Things got better by my early 'teens as I was able to start injecting myself. I can tell you anywhere you can get a bleed into I've had it more than once. Most living with this problem end up having what's known as target joints. It means after a certain amount of bleeds into a particular joint, a form of arthritis occurs. It becomes a vicious circle making that joint more vulnerable. I consider myself fortunate in having the treatment from birth, although it's had its problems…

What about your family?

My family of course have always known about my medical condition, as I mentioned earlier it's a genetically inherited condition from the mother to infant. It was not necessary to hide the facts as everyone knew, and I always felt loved and accepted by my parents and treatment, it is I think the most dramatic. Some of you reading this may remember the early days, the type of stories and panic that surrounded the issue of transmission, news stories showed people as lepers not to be approached for any reason. It seemed that anyone with a Dr in front of their name was able to get on TV, or in the press and talk about how there was no hope of survival, even the World Health Organization made predictions that seemed to inflame the situation and make it all seem so catastrophic. Of course this is not to say it wasn't bad. I think part of the reason for this was that HIV/AIDS seemed to come out of nowhere. It shook the scientific community as much as anyone, and of course world politics came into it as well, but these are all the big issues.

How old were you when diagnosed HIV?

What it was like for me as a 15 and 16-year-old, and the effect on my parents and sisters was what I knew. I'm not a parent, I've never had to face my own child and know that they are facing certain death, have a brother or sister with a terminal illness, but I was old enough to see the strain it put on everyone. No one was sure of what to say to me, particularly in those early years when the average life expectancy from diagnosis to death was 18 months.  I've lived in the area that I live now all my life, and went to the local schools, had a good circle of friends that might not sound like a big deal but when I was an infant it was not known if I would be able to attend the local schools. I did, and had a good time doing it … I don't know what it's like to be black or any other race apart from British, but I know what it's like to be classed a minority with this problem.

What about fitting in with others living with HIV?

Unlike the gay or African community for instance, there is no real  social group to come from. This has made life difficult having contact with others in the same situation, even though the Haemophilia Society along with some living with the problem have tried to improve things. A feeling of isolation was inevitable, though having had an involvement in TVPS has given me the chance to meet a wide variety of people living with HIV/AIDS. Of course having survived for this length of time, more than 20 years, parts of my life have obviously been very badly affected, but in others I've become a stronger person, and met people I would never have met, had experiences I never would have had. If I think back to a few years ago, just before drug therapy had become available, when my CD4 cell count was 30, and viral load testing was science fiction, it was a bleak landscape to be in.

I got the chance to try experimental drugs, I was lucky that although things were bad for me, I had not developed any illnesses, and even though there was much unknown, I still decided to try them. Of course for myself to have a go back, at a disease that has taken so much from me, but despite some propaganda in the media making this disease out to be just a gay problem over the years, although I have sympathy for any and every group worldwide, it is not, and as some of you reading this will be only to aware, women and children are the ones most affected.

Have you a family yourself?

I have no children, or wife of my own. But I like to think I could do my bit in helping to end this plague on society for all of us, and like me, many in parts of the world had little choice in the matter, whatever their orientation or life style. Which is why I hope everyone throughout the world will get the drugs soon. We can all say what if I hadn't done this, or that in my life; regrets are a waste of energy for me.  I was born at a time of great hope for someone with my medical condition, worldwide the World Federation of Haemophilia estimates there are about 400,000, but only 30% receive treatment, so like I said; I consider myself fortunate, I'm strong and fit. I wouldn't be if it wasn't for the efforts of a lot of people from my days at Hammersmith, and now at the Churchill Hospital in Oxford, and the Garden Clinic at Upton Hospital, as well as for a brief time being injected at my local GPs.

Do you feel different because of your Haemophilia?

Being born different doesn't mean less, whether genetically, the pigment of your skin or perhaps not being born here, in this publication recently there was a letter replying to an article written by a doctor about asylum seekers, for what it's worth, I would like to agree with this person, HIV/AIDS has always been too political for its own good. Unity is the only way to beat the issue, not infighting, don't forget the world's one big onion… I can't talk for anyone else at my age suffering with this condition, but I see myself more X-men than victim, a bit wolverine…                      

I can't claim any special powers, apart from being able to eat great amounts of chocolate, and leap a beer glass, I'm supple jointed too, and would like to meet storm…Finally, though in the far east they say you live in interesting times, I certainly have… Robert

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