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Auto Immune Liver Disease
On my last day of primary school, when I was 12, I was diagnosed with Auto Immune Liver Disease.
The first awful thing that happened was that my biggest crush asked me “What’s wrong with you, why are your eyes yellow?” as if I had some sort of horrible disease. I was 12; I thought the world was going to end. Soon after that I was involved in a production of the Wizard of Oz with my ballet school, I was a witch. People kept asking me if I had been on holiday, as I looked tanned, and one little girl told me “You really look like a witch because your eyes are yellow”. When the doctor told me what was wrong with me all I could think about was how exciting it would be to spend the night in the hospital. It wasn't until I had spent a week in the hospital waiting to have a liver biopsy which, in the end they couldn't do, that I started to cry.
My GP diagnosed me with Cytomegalovirus (CMV) after he had taken a urine sample and told me to stay off school for a week. He then made me an appointment at the Sick Kids Hospital in Edinburgh where they ran some tests and then told my mother and I to come back in a few hours. When we came back the very lovely doctor sat us down in a private room and explained the diagnosis.
Throughout high school I was involved in lots of sports and dance. At 16 I left home to go to an International School in Canada where I learned to Scuba dive. At 17 I went to volunteer in Uganda for a year. At the moment I am on my second gap year, which I am currently spending volunteering in Palestine, before I go to University in London in September to study Anthropology. In other words, my disease has had very little affect on my life.
Over the past 7 years I have had two liver biopsies, a bone-density scan, I have been on Prednisolone, and Azathioprine and to counter the side effects of those I have had to take Vitamin K and calcium tablets and for a while I had to check my blood-sugar-level because I had mild diabetes. Currently I take 75 mg of Azathioprine every day.
I have blood tests every 3 months and see the specialists in Edinburgh every about every 6 months.
I have just moved up to the Royal Infirmary and, although I was very sad to say goodbye to the Sick Kids Hospital, my new doctor is lovely.
One of the worst things about my condition has been the medication: when I started high school some of my friends didn’t recognise me. The steroids made me fat, gave me a big round face and a fat tummy and I got horrible stretch marks on my bum, thighs and breasts. Also, I have scars from all the blood tests.
I came off my medication for a while – with permission from my doctor – because I hated taking pills every day. At times I have cried about being sick, other times I cried about being fat, sometimes I just cried. For the most part, however, I have never really felt sick, and my “horrible disease” has never held me back.
Lots of things worry me about having a liver condition. I am currently in remission but there is a high chance I will relapse but no one can say when. So I worry about that. I worry about the effects that taking medication everyday will have on my body. I worry about the effects the medication could have on my children. I worry about passing on the condition to my children. I mean I don't sit around all day and think about these things but they are at the back of my mind and I don't look forward to them changing position.
Not really, I think ultimately I have simply been pretty lucky to not be hit so hard while others of you just haven't had a break. So no, I am sure you are all dealing with your various conditions in the best way possible and I wish you all the best in everything that you do.
