ABOUT SCLERODERMA

Scleroderma is an uncommon autoimmune disease that affects the blood vessels and sometimes internal organs (gut, lungs, kidney, and heart) and is associated with an overactive immune system. The main feature is the body producing too much collagen which results in thickening of the skin & possible problems with internal organs. This varies from patient to patient. The exact cause of Scleroderma is not known. Anyone of any age can develop it although it is between 3-9 times more common in females than males and most sufferers are diagnosed between the ages of 30-50. At present there is no known cure for Scleroderma. Without treatment, Scleroderma can be fatal. Better use of drugs for specific problems has improved quality of life and survival. A form of chemotherapy & various other similar drugs are sometimes used to stabilise the disease.

The Academic Section of Musculoskeletal Disease at Chapel Allerton Hospital, Leeds, is an internationally renowned rheumatology centre; one of the 'European Centres of Excellence'. Its head, Professor Paul Emery, (a leading expert & recognised lecturer in the disease) heads a team of highly qualified, specialist doctors who are committed to finding a cure and providing optimal treatment for this debilitating condition. Dr. Maya Buch also has a specialist interest in the disease and recently spent a year in America at one of the largest scleroderma units in the world.

At the Scleroderma clinics in Chapel Allerton Hospital, Leeds, patients will be seen by rheumatologists together with dermatologists, lung and eye-care specialist doctors, podiatrists, and Scleroderma nurses.

For more information about Scleroderma Care at Chapel Allerton Hospital please contact Dr. Maya Buch (Lecturer) or Elizabeth Tyas (Nurse Specialist). Further information on the rheumatology unit and its research activities can be found at the following websites http://www.limm.leeds.ac.uk/research_sections/musculoskeletal_disease/

For more information about the Acorn charity please go to info@acorncharity.org.uk

Acorn has now supported research into Scleroderma by the Leeds Rheumatology Department for 10 years. During that time, this support has provided for major changes in the way Scleroderma patients are cared for in our region; there has also been much more understanding of we can best use the treatments we have. Although it is an illness that most commonly affects young women in the prime of their lives, it does not always receive the attention and support that it deserves.

Scleroderma literally means "hard skin". However, it can affect much more of the body than just the skin. It is a chronic disease, and although the exact cause is not known, we do understand that the body's own immune system attacks itself.

Scleroderma affects young women most often; it usually starts between the ages of 20-40. Swelling and itching of the skin may be the first symptom, especially in the hands and most patients develop Raynaud's Syndrome, when the fingers turn white and blue with just the slightest drop in temperature. Eventually, however, the skin hardens and tightens and often this can be severe enough to distort the shape of the fingers. This can also happen to skin elsewhere. The circulation problems can cause ulcers on the fingers and toes.

The same process of inflammation and scarring which leads to skin thickening can happen inside the body. This causes a great deal of the complications of scleroderma and can even be fatal. The internal organs affected are often the lungs, heart, gut and kidneys. Patients may struggle to breathe or they can become malnourished.

The condition cannot be cured but can be treated. We can use drugs to try and damp down the body's immune system and other medicines can be used to open up the circulation. These drugs can be given either as tablets or by a drip. However, these drugs cannot always control the illness and a few patients need to have heart-lung transplants or go onto kidney dialysis.

Acorn has supported research into scleroderma in Leeds for several years. During that time, there have been a number of dramatic breakthroughs in the treatment of many rheumatological illnesses like rheumatoid arthritis and lupus. Although these conditions are often related to scleroderma, there is still a need for similar breakthroughs in scleroderma, which is one of the most difficult diseases to treat.

Acorn's support for doctors carrying out research in Scleroderma has led to some clinical breakthroughs. We have shown that using chemotherapy type drugs for lung disease can be safe and effective. We are involved in studies of stem cell transplantation in severe scleroderma as well as studying ways of trying to heal Scleroderma skin.

10 years ago, Scleroderma patients did not have a specific doctor or clinic which they could attend. Acorn's contribution began by supporting one research doctor. Since then, there have been many doctors who have gained specialist training in Scleroderma due to Acorn's efforts and there are several members of the current team who have a specific interest in Scleroderma. Patients have access to a dedicated helpline and clinic, where they will be seen by staff who are familiar with the illness and just as importantly, staff who will know that individual patient well.

We are now working from brand new purpose built clinical and research buildings at Chapel Allerton Hospital in Leeds. We have installed equipment donated by Acorn for the early diagnosis of scleroderma in this clinic. We can also carry out ultrasound and magnetic resonance (MR) scans in the same department to see what is happening under the skin of Scleroderma patients.

Major changes in the ways patients are treated have occurred here over the past decade and that has allowed us to make the most of your support for Acorn. Leeds is now recognised as a major centre for scleroderma in the region. The Leeds Teaching Hospitals NHS Trust is one of the largest Trusts in Europe and so Acorn's support has made a difference to a great many patients from across Yorkshire and further afield.. Leeds NHS Trust and University has recently received one of the largest grants for research in Rheumatology and related areas; much of this money has to go to supporting the infrastructure of a big Unit but that means that we can focus Acorn's contribution directly onto research and patients' care. In this way, Acorn's contribution brings with it "added value".

Although scleroderma can be a very difficult illness to treat and more importantly to live with, I'm always struck by our patients' strength. They invariably cope with their illness with courage and without complaint. They are the ultimate motivation for those of us in the Scleroderma team in Leeds. We are very grateful for the involvement of Acorn and of everyone who supports this work.

- Dr Shouvik Dass