Henry Steele, 24, from Ampleforth, calls for automatic donor system

Henry Steele with just some of the medication he has to take for his condition

Henry Steele with just some of the medication he has to take for his condition

Updated in News by

A MAN who has suffered from liver disease since the age of 10 is urging more people to become organ donors.

Henry Steele, who lives in Ampleforth, wants to see the introduction of Government legislation that would automatically register people as donors from birth.

The 24-year-old has suffered from a number of long-standing medical conditions, including primary sclerosing cholangitis and ulcerative cholangitis, but his health has deteriorated over the past 12 months.

Henry sleeps for more than 17 hours a day and has spent weeks in hospital. “I need frequent attention and am suffering blackouts, which has meant I have had to move back in with my family. I am unable to drive or go out far,” he said. “To encourage myself to stay positive and focused, I have a keen interest in photography.

“One of the side effects I get is extreme itching, which feels like I am bathing in itching power and leaves me climbing the walls.”

Despite his illness, Henry completed some studies, but was forced to leave further education because of ill health. He worked in security at festivals and as a door supervisor for a number of years.

“I do have a very positive outlook, but it is difficult as my condition has a big impact on my life and I am more or less housebound now,” he said. “At the moment I am judged too healthy for a transplant, but I hope this year I will be re- assessed and get on the waiting list, so I can eventually get back to work and lead a normal life. I want to highlight the need for people to become donors and also highlight the process involved in being put forward for a transplant, which can often be long and difficult.”

His mother, Yvonne, said Henry had first become ill when he was at primary school. “He started saying he was tired, but I thought it was an excuse not to go to school. Then he started passing blood and looking more and more yellow and jaundiced,” she said. “I took him to the local GP, who referred him to York Hospital and then St James’ Hospital, in Leeds, where he was diagnosed with autoimmune hepatitis and ulcerative colitis and then with primary sclerosing cholangitis (PSC).”

Yvonne said she was told it was not contagious and the causes were unknown, but likely to have a genetic link which possibly needed an environmental trigger. “Basically, Henry’s immune system went into hyper drive and started attacking his liver and large bowel,” she said. “Fortunately it was very quickly diagnosed and, along with the treatment and support we received from the medical profession, we were also put in touch with the Children’s Liver Disease Foundation, where we could meet other parents, which was a fantastic support.”

Yvonne said they knew Henry would possibly need a liver transplant in the future. “His condition is regularly reviewed, and, when and if a transplant is approved, there are substantial risks involved with the operation.”

Yvonne said all the medical staff had been fantastic.

“We couldn’t ask for anything more, but it is a waiting game,” she said. “Henry is very positive and loves life and people, but his condition means he is very isolated and unable to live independently. I hope that this is the year that he finally gets a transplant and can get on with his life.”

 

• NHS figues show that 73 people died in our region while waiting for organ transplants in the past five years;

• Fifty people received organ donations last year, but 200 more are on the waiting list;

• The NHS Blood and Transplant service is encouraging people to register as organ donors. To join the NHS organ donor register, visit www.organdonation.nhs.uk or phone 0300 123 23 23.

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