We’re all conscious of how much life for young people with a liver disease has changed in the 40 years CLDF has been here. But we are privileged to hear Anne’s experience of being a child with a liver condition before CLDF. Anne who is 71, and was diagnosed with autoimmune liver disease when she was ten years old, shares her story with us.
I first became ill in 1959. I don’t recall feeling unwell but gradually my skin turned yellow. The children at school kept away from me as they were frightened they might catch something. My mother took me to the GP, but I wasn’t told anything about what it might be because in those days such things were not discussed with children.
At some point I was referred to the Royal Alexander Children’s hospital in Brighton where we lived. I was seen on a number of occasions by a paediatrician and I was put on a fat free diet which my mother was very particular about. I should stress that the speciality of hepatology did not exist in the 1950s and little was known about the liver.
I was being seen in the Out Patients clinic one day when a locum doctor saw me and was shocked that I was not in hospital. I was then admitted to Brighton General Hospital and from there transferred to Hampstead General Hospital which had the children’s ward linked to The Royal Free Hospital under Professor Sheila Sherlock, to whom I have to say I owe my life. She popularised needle biopsies of the liver and I remember having this procedure. It was after this that my parents were told that two thirds of my liver was destroyed and that I had six months to live. This was just before Christmas, and expecting that it would be my last, they asked if I could go home for the Christmas holiday. Their wish was granted. I was also started on prednisolone in the hope that this might help. ( Prednisolone was only licenced for medical use in the USA in 1955 and it was in 1971 that Professor Sherlock showed that auto immune liver disease could be treated with steroids).
It did help and it wasn’t my last Christmas. I returned to hospital after the holiday and after discharge, I was an out patient at the Royal Free for six years (1960-1966).
My mother always wanted me to give something back to the medical field so I trained at a nurse at St Mary’s Paddington from 1966-69. At this time, I was no longer on steroids, in fact I was not on any treatment. I went on to have a varied career working in hospital, community, management, public health and research.
In 1973 I had my son with no ill effects and continued to work. My daughter was born in 1979 and again I had no problems through pregnancy. When my daughter was about two years old, however, I had a relapse and was put on prednisolone and diuretics. I had to take three months off work and although I was not admitted to hospital (by then the John Radcliffe in Oxfordshire) because I knew the consultant well, she insisted that I rested at home. I had a home help and saw the consultant once a week for examination and blood tests. I remained on steroids for a long time, gradually reducing the dose, but have been off all treatment for some time now. I am seen every six months at the QE2 for ultrasound and blood tests also have endoscopies regularly. The main restrictions my liver condition places on me are the limits and added expense in getting life and travel insurance!
After retiring, I spent five years in London looking after my grandson. Now I live in the Midlands and help my daughter with two grandchildren who live nearby. As a child I was not allowed to ice skate or play hockey due to concerns of injuries. So, at the age of 65 years while in London I started ice skating. I also walk daily with my springer spaniel, do folk and tap dancing and exercise class weekly. I also like reading and craft work.
How it affected the family
My mother often questioned as to why I became ill and whether it was her fault. At school we were provided with a little bottle of milk every day. I hated milk but was forced to drink it, and my mother thought maybe she was to blame for making me drink the milk. Prior to me being ill we had been on holiday and my sister and I swam in an outdoor swimming pool. Mum and Dad were concerned that I had picked up some in infection in the pool and blamed themselves.
My mother was quite religious and I went through a period in my teens when I was. I think it did help us cope. Another thing that helped the family cope was hope. When I was training to be a nurse at St. Mary’s I worked with patients who were awaiting kidney transplants. My mother was always hopeful that one day they would be able to do liver transplants and although thankfully I have not to date needed a liver transplant it’s wonderful that this is now possible.
My parents were quite protective, although do not know whether that was their nature or exaggerated because of my illness. I was not allowed to ice skate or play hockey or do horse-riding. Even when I left home and went to London, the rules were strict, we had to live in the nurses’ home until we were 21years old and even then, had to have our parents’ permission to live out. My father would not grant me that permission!
How it affected me
As I was a rather rare case, and as indicated earlier little was known about liver disease, I did not have any support from children with similar conditions. My parents too did not get any support. Things were far less open and even I was unaware of how ill I was.
I think the support I would have liked most would have been at school. I was diagnosed when I was in what now would be Year 6 and was transferring to secondary school. I feel that I never really settled at secondary school and had few friends there.
In those days visiting times even in the children’s ward were very restricted and there were no facilities for parents to stay even with very sick children. This was OK while I was in hospital in Brighton as my family were able to visit within the allotted times. However, when I was transferred to Hampstead my mother used to travel up every day. This meant my sister was “home alone” until Dad arrived home from work. Eventually with some negotiation mum was allowed to come during the day to see me outside normal visiting times. However this meant that during visiting times when all the other children had visitors I had none!
My mother was very fussy about my diet and I always had to come home for lunch. I think missing out on lunch time play times had an effect on making friendships at secondary school. I remember other children having crisps and I really fancied them but was not allowed. I also wanted to go to Art College but mother would not allow this, she was worried I would get involved in drugs!
The other thing that affected me as a child were my appearance. From the steroids ,I had the typical “moon face” and was overweight. My sister was slim and blonde and I always felt I was unattractive, she had all the boy friends! This may have affected my poor choice of relationships later in life. I have also always had a red nose which people comment on and at times has been upsetting. In a household where make up was taboo it was difficult to disguise.
My sister was always the clever one, and although I missed a lot of school, I don’t think I would ever have been as bright. I was the more practical one! She trained as a doctor, – I think this was with influence from my mum! I did find it hard that she was better looking and cleverer than me and I have tried to achieve as much as her. I think I have succeeded in that, I have a Master Degree and had a varied career.
What an amazing, inspirational lady. Xxx
So insightful and so grateful for what you have done to help others, as a result of having something horrible affect you. Amazing to hear that you are able to do so much now and thanks for sharing this and giving up your time with supporting others and health research in general.