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Dr Kate Lorig, is a Professor of Medicine and Director of the Patient Education Research Center at Stanford University in California where she has developed a successful self management programme which has helped thousands of people suffering from long term conditions in may parts of the world. She also has Gauchers disease.
'I was diagnosed with Gaucher disease when I was three years old', says Kate. 'Our family GP felt that something was wrong and referred me to a paediatrician. 'At the age of nine years old, I was taken into hospital and given large doses of steroids for 10 days. I then continued having the steroid injections once or twice a week for another two to three years. Not the recommended treatment now for Gauchers disease.
'My parents were told that I would be retarded by my late teens but I actually had a normal childhood. However I was told not to ski and this was difficult as I was brought up in an area where everyone skied. 'I am now 61 years old and although I have an enlarged liver and spleen, I feel fine. I walk for an hour every morning, meditate regularly and do a light weight work-out. 'I have a brother who also has Gauchers disease and my sister is a carrier.'
Decision not to have Treatment
Kate decided not to have children: 'I did not want to pass on the disease at the time when there was no treatment. This was my personal choice.' Kate also decided not to go on enzyme replacement therapy for personal reasons. 'I work as a health service worker and the cost of the drug troubled me.
But just because I made the decision not to take drug treatment does not mean that I never will. It will depend on how my disease progresses and the discussions I have with my physicians. 'This is also a very personal decision and I certainly honour whatever decision another individual makes.'
Self Management Program
In the 1970s Kate (then a post-graduate student at Stanford University in California, USA) under-took a study that involved devising and testing a patient education programme for people with arthritis. The aim was to introduce sufferers to a range of techniques that would enable them to feel more in control of their arthritis on a daily basis; and then train them to deliver the course to others.
This program became the Arthritis Self-Help Course which is now offered to thousands of people with arthritis in the United States, Canada, UK, Australia and other countries. Kate says: 'While I cannot say that having Gaucher disease was the reason for developing the program, it certainly has influenced the way I think and see the world.'
Six Week Course
The Programme is a course run over six weeks with each session lasting 2½ hours. It is delivered from a scripted manual by a tutor who usually has the same condition. The course covers topics such as relaxation, cognitive symptom management, exercise, fatigue, communication and health care professionals.
In 1994 these self-management courses were introduced into the UK by Arthritis Care which developed its own disease specific programme Challenging Arthritis based on Kate's Arthritis Self-Management Course.
At the same time, the Long-term Medical Conditions Alliance (LMCA), an umbrella charity to which the Gauchers Association belongs, supported the further development of the Course through its Living with Long-term Illness Project. 'These courses can help people develop the confidence to take control of the day-to-day management of their long-term illness,' says Jane Cooper of the LMCA. 'The aim is to attain the highest possible quality of life, by working with professionals and others to make best use of all available sources.
'In addition to Kate being the originator of the Course we, in the UK voluntary sector, know Kate as a friend and a true and generous supporter of the movement to empower people with long term conditions. 'The programme has helped people with many conditions including HIV and AIDS, Back Pain, Manic Depression, Multiple Sclerosis and Facial Disfigurement.
Government Launch of Expert Patients Programme
At a meeting of tutors who were gathered to meet Kate in London in April, one said: 'I have gained a fresh outlook on life after completing the course and training others.' Another said: 'I have become involved in new activities directly as a result of the programme.'
In 2001 the UK Government became so impressed by this work that it launched the Expert Patients Programme with the declared aim to make self-management courses part of mainstream NHS care.
The Department of Health has said that the programme will be included into the main stream of healthcare provision in the NHS from 2004 to 2007. Further details about Challenging Arthritis can be obtained in the first instance from Arthritis Care. For more general information and where courses are offered, look at the LMCA website on www.lmca.org.uk
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Source: Gauchers News October 2003.
© Copyright Gauchers Association Ltd 2003.