Anne's Story: Gaucher Sufferer to Fights General Election as Labour Candidate


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Confined to a wheelchair due to severe multiple fractures in her legs and hips, Anne Begg was nominated as Labour Candidate for Aberdeen South last November. She was elected a Member of Parliament on 1 May 1997. A full time Principal Teacher of English at Arbroath Academy, Anne tells her story:

I was diagnosed as having Gauchers disease when I was 8 years old in 1963. My mother, a nurse, had felt there was something wrong for some time. She wondered why I had such a large stomach that I needed to wear braces to stop my skirt slipping down. I also suffered from tummy pains which the GP dismissed as not being serious.

Enlarged Spleen

Eventually I was referred to a paediatrician at Dundee Royal Infirmary who discovered that I had an enlarged spleen. Nothing was done about it until I was 11 when my family was advised that I should have it removed.

By that time I looked very pregnant and there was a fear that my condition would interfere with puberty and my spleen might rupture. The spleen weighed 4lb and my doctor joked that the dish was not big enough to hold it and they had to find a larger one.

Unfortunately that was not the end of the matter. After the operation, I continued to have severe pains and it was eventually discovered that my diaphragm had not been sewn up properly. My stomach had escaped into my lungs and I became critically ill. I was delirious and to this day I vividly remember the nightmares I had. It took 48 hours to stabilise me before another operation could be performed. The original splenectomy also created further problems in my bowel which became obstructed due to adhesions and the wound became septic.

Bone Pain

When I was 14, I began to suffer acute pain in my bones. Sometimes I could not move my knee or hip. My father is an orthotist, someone who makes braces, splints and special shoes for people with bone problems.

He managed to get me referred to an orthopaedic surgeon but no-one had any idea what was causing the pain. There was no evidence on X-rays. I suppose I was lucky that I was always believed.

My father made me plastic splints to keep my knee straight when I was in pain. If I was immobilised, the pain would get better after a couple of weeks. At this time, the doctors looked for other explanations than Gauchers disease - they had so little knowledge of the disease.

Fractures

When I was 16, I suffered my first fracture in the lower part of my femur, the long bone which runs from the hip to the knee. I was in bed at the time. I just turned over and felt a terrible pain in my knee. My parents thought it was a similar pain to the ones I had been experiencing but after 10 days of excruciating pain, they thought it was more serious and the leg was X-rayed. The fracture ran right through the bone just above my knee.

This happened three weeks before sitting my first set of Higher Exams (equivalent to A levels) and I sat the most important exams of my life in hospital. I am proud to say I passed both English and Maths but I failed History partly, I think, due to not being able to swot sufficiently and partly because it was a History book I was reaching for from my bed when the fracture occurred. The next year I passed History with an A grade.

The following January I fractured the other leg while I was asleep. I woke up at 4am and knew it was broken. I alerted my parents who put a splint on it, gave me painkillers and said we should wait until the morning to do anything else. At 8am we called the ambulance. I sat my next set of exams that summer with my leg in a calliper.

Wanted To Be A Teacher

I had always wanted to be a teacher and applied for entry into Teachers Training College. I was refused because of my medical history and the fractures.

At that time in 1972 the General Teaching Council (the body with which all teachers in Scotland must be registered) barred anyone with a disability from becoming a teacher. This came as a great shock to me because until then I had never considered myself disabled. I walked with a stick but never thought this could be grounds for stopping me doing what I wanted.

My brother, who does not have the disease and was a 4th year medical student at the time, came with me to argue my case. He undoubtedly knew far more about my condition than the doctor reviewing my case but the doctor insisted I was not fit to teach.

Determined

I was determined to show them I could not be so easily deflected. I still wanted to be a teacher and went to Aberdeen University to study History and Politics. There I continued to suffer two further breaks in my legs and my hips stiffened. I took strong painkillers and struggled to walk with two sticks.

When I graduated, I again applied to the Teachers Training College. The same doctor told me that I must go two years without any absence by any cause before he would allow me to register with the General Teaching Council.

Miraculously I suffered no more breaks in those two years. In fact my bones seemed to get stronger and I was able to walk without a stick and only a slight limp. I went back to university and took an English degree and then during my post-graduate year taught at three different schools.

I qualified aged 22 and took a full time teaching job at Webster's High School in Kirriemuir where I taught English with History. Unfortunately my bones began to deteriorate again and at the beginning of 1984, I went into hospital for four months after some serious fractures. It was then I started to use a wheelchair.

Wheelchair

Using a wheelchair was a turning point in my life. The pain disappeared. Previously I could not stand for more than a few minutes nor walk without immense pain. I could start to work properly again, have a social life and think about what I wanted to do next. Even the function of my legs improved and I realised that I should have begun to use the wheelchair earlier.

I would have saved myself a great deal of pain and perhaps stopped more breaks occurring. I also gained more energy. My wheelchair opened up a whole new world.

I continued to teach and got involved in other things too. In 1985 when the teachers took industrial action, I became heavily involved in the Trade Union. I had joined the Labour party in 1983 and now in a wheelchair I could go to meetings and take on positions.

In 1988 I was named Disabled Scot of the Year. By this time I was also involved in community activities, some with disabled connections, such as wheelchair access, and also with equal opportunity issues. I was also gaining promotion in the teaching profession.

Enzyme Replacement Therapy

Another turning point in my life was in October 1993 when I began Ceredase enzyme replacement therapy. About six months earlier, my brother, now a doctor, heard about the treatment.

My orthopaedic surgeon referred me to a biochemist in Dundee and I began receiving infusions at my local hospital, three times a week, each lasting two hours. After another six months, I began infusing myself at home on my own. Now I do it twice a week, still over two hours. The first year it dominated my life but now it fits round the rest of my time and is no problem.

I have had no fractures for 18 months. Before and just at the beginning of the treatment, I was getting small cracks in my ribs. My blood is completely normal for the first time in my life, and the difference in my energy level is amazing. I never realised before the difference between tiredness and exhaustion.

Before treatment my liver was getting very big, now my liver function tests are normal. I don't have such a big belly and my bone densitometry readings are going in the right direction. I feel my bones are getting stronger. I know there is not much proof for this but then my pain did not show on any test either.

Unfortunately my leg bones became so badly aligned that I do not think I shall be able to walk more than a few steps again.

Future Challenge

One thrill came in 1995 when I was elected to serve on the General Teaching Council, the same organisation whose medical standards almost prevented me becoming a teacher twenty years earlier. Knowledge and attitudes have certainly changed during this period.

Now I have a future. Before I always worried my joints would deteriorate further. I had stopped planning ahead. Now I can anticipate a normal life span and standing for Parliament has become possible.

I can now look forward to perhaps my biggest challenge yet.

Editor's Note: Whatever your political persuasion, I am sure you will wish Anne the very best of luck in her quest to represent Aberdeen South as their Member of Parliament. Her courage and determination must be an example to all Gauchers sufferers and to disabled men, women and children everywhere. Anne was elected a Member of Parliament on 1 May 1997.


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Source: Gauchers News March 1996, updated May 1997

© Copyright Gauchers Association 1996, 1997