I was three when doctors at Great Ormond Street children's hospital diagnosed me with the inherited blood disorder haemophilia. My brother, Jason, then one, had the same condition. Our bodies lacked a protein called Factor 8, which causes the blood to clot. A small knock or fall would cause us to bleed internally, and, in the worst cases, we had to be rushed to hospital for a blood transfusion. Even kicking a football was enough to trigger a bleed, so we could be back and forth to casualty as many as five times a week. It was the 1970s and, unlike today, haemophiliacs didn't have a long life expectancy. Our parents were told we would be lucky to reach adulthood. However, they were determined that we would live a normal life, and Mum even persuaded the education authority to let us go to a mainstream school - something unheard of in those days.
Despite my parents' best efforts, I always felt set apart from everyone else. I couldn't do PE and missed weeks of school because I was in and out of hospital. The agony I felt as blood built up under my skin and the fear that gripped every time I was left alone on a hospital ward was something only Jason could really understand. Like most siblings, we fought like cat and dog, but we always looked out for each other. We didn't need to be told how serious our condition was. When I was eight, I had a severe nose bleed and lost three quarters of my blood. I remember lying in my mum's arms as we waited for the ambulance and watching the panic grow in her eyes. I knew she thought I was going to die.
Soon after that, medical advances in the treatment of haemophilia changed our lives for ever. Factor 8 became available in a powdered form, which could be stored in our fridge at home. Our parents were shown how to inject us, which meant that they didn't have to call for an ambulance each time one of us had a bleed. It also meant that we could go on holiday for the first time in our lives. We went to Jersey, and I had my first experience of air travel. The freedom I felt as we soared through the sky was indescribable, and I decided I wanted a career in aviation. I was determined my illness wouldn't stop me.
In 1984, when I was 15, I went into hospital for an operation on my knee. As I was leaving the hospital with my mum, a nurse stopped us. "Do you want to know the results of the boys' HIV test?" she asked. Before Mum even had a chance to reply she told us that the results were positive. None of us really knew what HIV was - Mum didn't even know we had been tested for it.
A few days later I had to go back to hospital for a check-up. This time Jason and Dad came too and we were able to ask one of the doctors about what the nurse had said. I hardly took it in as he explained that a dreadful accident meant that the Factor 8 we had been using was contaminated. As a result, Jason and I had been infected with HIV and had as little as five years to live.
"It would be advisable not to tell anyone outside your family," the doctor said. Then he suggested to my parents that they should pamper Jason and me, perhaps by taking us on a trip to Disneyland. My parents were so shocked they hardly spoke on the way home, but for Jason and me, it was just something else to add to the list of things we had been told would kill us. We both had a defiant attitude to mortality. Like many young people, we thought death was something we could somehow sidestep.
Then news of the Aids epidemic started to sweep through the country. I couldn't switch on the television or pick up a newspaper without being reminded of it. An awkward silence filled the living room whenever the government advertisement came on, depicting a tombstone with the word Aids etched across it. For the first time, I began to feel scared and angry. I didn't want to carry a virus that was connected to drug abuse and unprotected sex.
Jason and I were so scared of our secret coming out that we didn't even dare talk about it to each other. The stigma HIV carried was heightened for me by the knowledge that I was gay. I decided to keep my sexuality a secret along with my HIV-positive status. In some ways, the shame I felt was worse than the fear I might die. I had faced the prospect of death all my life - the shame was new to me.
On a positive note, I think it made us more determined to make the most of the areas of our lives that we could control. For me, that meant pursing my dream to work in aviation. At 16, I landed a job with a major airline and soon worked my way up to cabin crew. I made friends easily and tried to push my health problems to the back of my mind. Although I was open about the haemophilia, I kept my HIV a secret, just as the doctor had advised. I did, however, reveal my homosexuality, and began going to gay clubs, which I found liberating in more ways than one. In the safety of that environment I could talk freely about my sexuality and, for the first time, my HIV. In the gay community everybody knew someone who had contracted it, so I didn't have to worry that people would run a mile when they heard I had it too. The shame I had been carrying around disappeared, and it was like a giant weight had been lifted off my shoulders.
Jason, who is straight, didn't have that, and I worried for him because of it. We were no longer living together, but I still looked out for him, passing on any information about the virus that I learned. Despite everything I had been through, I actually felt like a lucky person. I had landed my dream job against the odds and was travelling the world and enjoying life. Then, at 22, I was dealt a further blow. My consultant was updating my notes during a check-up when I noticed the letters HCV written on them. When I asked what it was, she revealed that I was also suffering from hepatitis C. "It comes on the back of the HIV virus," she said. "It's nothing to worry about."
I had never really questioned what I had been told before, but this didn't ring true. When I started to read up on the condition, I realised that it was very serious and could lead to liver failure. The consultant told me to lay off alcohol but I did the opposite. I went clubbing most nights of the week and did what I could to blot out what I had just discovered. There are only so many life-threatening conditions that you can find the will to fight. Jason's way of dealing with it was to be frivolous with money. He lived for the moment and never worried about debt.
By 1997, I was back on track and had worked my way up from cabin crew, but then I was forced to take early retirement on medical grounds. Three years later, I developed a lump on my brain that nearly killed me. I signed a form to say that I didn't want to be put on a life support machine if it came to it, but miraculously I pulled through.
Jason hasn't been as ill as me, but we both now suffer from Aids. We are both in settled relationships, and I am involved in a support group called Tainted Blood, which helps other people in a similar situation. In the late 1970s and early 1980s, almost 5,000 haemophiliacs were exposed to HIV and hepatitis C through contaminated blood supplied by the NHS. Almost 2,000 have since died.
Jason and I have both been blessed with positive dispositions, but there are times when I get angry about what has happened to me. Jason lives about 200 miles away and we speak on the phone twice a week. We find that we can talk more freely now about our past and our health concerns. Death has always walked alongside us, and that makes us tough. I am not yet 40 but there is not an organ in my body that hasn't been damaged over the years, and I take a cocktail of drugs just to stay alive.
I used to accept that I was contaminated because of a dreadful accident, but now I see that it could have been so easily avoided. The blood used to make up the Factor 8 was bought by the NHS from America. Some of the donations came from prisoners and was used on us, despite there being no way at the time of screening it for HIV or hepatitis C. An independent public inquiry into the blood scandal was opened by Lord Archer of Sandwell in April last year and the results are expected any day. It's never too late to know the truth about why this happened. The blood we were given was meant to save our lives, not take our lives away.
• Daniel Parker and Jason Parker are pseudonyms. Daniel was talking to Danielle Wrate. For more information about haemophilia and the public inquiry, visit haemophilia.org.uk or taintedblood.info
