British Liver Trust
Robert Owen (Trustee)
"My younger brother Rhys, was initially born as what my parents thought was yet another healthy boy. However, they soon realised this was not to be the case as his eyes had started to yellow at around six weeks old and he became seriously ill. This could have been all manner of things but as it transpired he was diagnosed at a specialist liver unit at Kings College Hospital a few weeks later as having Alpha 1 anti trypsin liver deficiency (AATD). This diagnosis- given when he was just a few months old, would affect the rest of his life.
Alpha 1 anti-trypsin (AAT) is a protein mainly produced in the liver, which is then released into the blood stream and helps to control enzyme activity and remove bacteria from the lungs. It mainly affects lung capacity and liver function as a result. Although it is manageable in most cases it can be a life threatening conditions in others. He was put on a diet of high calorie baby milk, weighed rigorously to check his growth and attended regular appointments at the specialist liver unit in London. These trips to London were the first things that really made me realise that there was something more to his health compared to the doctor check-ups at the local surgery for my older brother and I, and missing out on the day off school always made me jealous! I did not realise Rhys' condition was serious until I was old enough for my parents to explain it to me properly and although he was always small for his age, I was just as small if not smaller, I never really though too much of it and treated him exactly the same.
As a young boy there were only brief moments when anyone would really notice, for example when he had difficulty breathing after cross country runs occasionally, but on the whole he was a healthy child and no one would have noticed his condition. He did always have a slight tummy, which always looked strange on a short skinny boy but this was due to his enlarged liver. One of the more noticeable things was when his peers started to drink or smoke. Rhys can’t due to his condition, as this would be devastating on an already weakened liver and lungs. The smoking ban certainly came at a great time for him, as this would have affected his lungs far more than others. AATD affects people to different extents and can become a lot more serious in the later stages of life but when he did finally grow, he really grew and he now stands at 6'4”! His health has remained in relatively good stead only because of the on-going work of researchers, healthcare professionals and charities such as the British Liver Trust. Without the continued commitment from these groups, people like Rhys wouldn’t have such a positive looking future.
The condition affects around 1 in 4000 people, and is caused by both parents having an abnormal recessive gene. This means my elder brother and I were lucky not to contract the same condition but could pass it on to our children if our partners also have this abnormal gene. This is partly why I am passionate about raising money for increasing awareness, developing research and of course providing care for other sufferers of AATD and other conditions.
Liver conditions are all too often associated with people who drink too much alcohol and most people do not realise how many other conditions exist and affect hundreds of thousands of people in this country. Obviously drinking affects many people’s livers but with the continuing rise in diabetes, for example, many more will be in need of help regarding their liver health soon. Liver disease is already the fifth highest cause of death in the UK, after heart, cancer, stroke and respiratory disease but crucially it is the only one still on the rise.
By supporting The British Liver Trust this year we are helping them in reaching over a million people through research, direct care and in raising awareness. The work they do and the personal connection it has to me is why the foundation has chosen to back this great charity!"