I will die the most horrible death

A television reporter who had experienced the horrors of war finds that was nothing compared with discovering he had inherited Huntington's disease

I was travelling with a camera crew and a translator into the Doboj pocket in northern Bosnia in 1995. We stumbled into a clearing in the middle of this wooded hilly area. Mujahideen fighters surrounded our Land Rover and held us in the vehicle while they discussed what to do with us. Meanwhile, a kid came over, smashed his way into the car and held a grenade up to my face. He then pulled the pin. At that moment, a Bosnian army colonel drove up, recognised the translator and calmed the Mujahideen down. He got the boy to put the pin back into the grenade.

A terrifying experience – but not as terrifying as getting tested for Huntington's disease in 2005. It was a black-and-white test: either I would be fine, and my children would be fine, or I would die the most horrible death in lingering misery. Nothing is more frightening for me than the thought of losing my abilities and ending up in a wheelchair, unable to communicate with anyone I love.

In 2005, I was in Iraq when I decided to travel to London to be tested for the Huntington's gene, which is done through a blood sample. My father, a career soldier with the British army, had died from the disease in 2001. And my brother, a brilliant barrister, had gradually stopped working as he developed the symptoms of the illness. Aged 54, he is now in the middle stages of the disease: from his unstable and jerky walk, it is obvious that he is ill and his cognitive functions are waning, which means that he often forgets things, for instance.

Huntington's is a genetically inherited disease. According to the Huntington's Association, 6,000-10,000 individuals in the UK have the symptoms and there are many more who have the gene and will develop the symptoms in mid life. People with the disease will experience the gradual loss of all mental and physical faculties to the point where patients need round-the-clock care. It is also a long drawn-out illness. I could live 15-20 years with advancing symptoms, including loss of all motor control, irritability, lapses in memory and brain function, agitation and possibly even violent episodes.

I was unaware when I went along for my test that the NHS would have funded it, so instead I paid £400 to have it done privately in London. Given my family history, there was a 50% chance that I too would have the gene, which would mean that I would get Huntington's.

Afterwards, I returned to work and waited for the results. During this time, I led parallel lives. One part of me continued with life as usual. Another part of me knew that my life was about to change.

Six weeks later, I learned that I will follow in my father and brother's footsteps. I will not escape Huntington's. The only way I won't get sick is if I die suddenly from something else, such as being hit by a car. There is no cure, but scientists in Denmark and the United States are developing drugs to suppress the symptoms. That is my only hope. I am 49 and the onset of Huntington's symptoms usually starts in one's 30s or early 40s, so I am an unusual case.

My paternal grandmother, whom I never knew, must have had the gene too, but she died from leukaemia in her 30s before manifesting any symptoms. In past generations, with their shorter life spans, many carriers of the gene died before developing the symptoms, so people are now getting Huntington's without even knowing they were at risk.

The day after I left Baghdad to have the test, the television company compound there was hit in a double suicide bombing. Nine people were killed and my room was destroyed. After I learned I had the gene, I went for a reflexology session. The reflexologist, who often treats well-heeled women lamenting not getting their children into the right school or stuff like that, asked me: "On a scale of one to 10, with 10 being the worst, how stressed are you?" I replied: "Well . . . I almost got blown up in Baghdad; I am sleeping on the floor of a friend's flat because I broke up with my wife; and I have just been told I have a terminal illness." She was silent for a moment and then said: "Now, that is a 10."

I remarried in January 2009 and our daughter is a year old. After everything my father went through, I know that the worst part about having Huntington's was his fear that he may have passed it on to my brother and me. So my wife and I had our daughter tested. Thankfully, it came back negative; my biggest source of joy today is that my daughter was spared this fate.

I now speak publicly on behalf of Huntington's families around the world. I chose to come out of the Huntington's closet, so to speak, in 2007 because I wanted to make a difference. Huntington's patients suffer in silence. There is a lot of shame surrounding the disease because patients appear to be out of control. Thousands of people in Britain are hidden away as a result. This disease has wiped out my family. There has to be something positive that can come out of this.

This article was amended on 21 December 2011 to remove personal details at the individual's request.