Scleroderma & Raynaud’s UK

The Scleroderma Society was founded in 1982 to provide support for both people with scleroderma and their families. Doctors specialising in this field were aware that people with scleroderma often felt isolated and alone given the rarity of the condition, so the Society was established to provide support and information about scleroderma to anyone affected.

Since its birth, the Society has developed considerably and continues to expand its activities, membership numbers and the services it offers. The Society is a UK registered charity and from its inception in 1982 until 2012, operated on an entirely voluntary basis by a team of dedicated volunteers and trustees. 2012 saw the appointment of the Society’s first paid member of staff, brought onboard to direct the Society forward to fulfill its potential. Everyone involved in the Society cares deeply about raising awareness and research for this rare condition and supporting those diagnosed with it.

We are a well-respected and trusted organisation both in the UK and internationally, with a reputation for providing reliable and excellent information on scleroderma as well as for keeping members informed with up-to-date news and research from the world of scleroderma. We are very privileged to have Professor Dame Carol Black as our president and Professor Chris Denton and Professor Ariane Herrick as our vice presidents.

• Helping You

  The Scleroderma Society was founded to help support people who have been diagnosed with scleroderma; it is what we are here for.

  We support people with scleroderma in a variety of ways but if there is a different way in which we can support you, please get in touch.

  Our freephone helpline is run entirely by volunteers, the majority of whom have scleroderma themselves. We cannot offer medical advice but we can point you in the right direction for further information. We can also offer a place where you can talk to someone who really understands scleroderma and how it can impact on you, family members and friends.

  Don’t feel isolated and on your own – call 0800 311 2756.

  Scleroderma Information

  Scleroderma (which comes from the Greek meaning ‘hard skin’) is a connective tissue disease that affects the skin and other major internal organs.

   

  It is an autoimmune condition, involving the overproduction of collagen and blood vessel damage. Excess collagen is laid down in these organs which in turn results in scarring and reduced normal function of the affected organs. Scleroderma can cause physical disability and be life threatening as the skin, joints, tendons, and parts of internal organs can all be affected. Autoimmune conditions occur when the body’s tissues are attacked by its own immune system.

  • Around 1 in 10,000 people in the UK have scleroderma, with women affected four times as often as men. There are approximately 8,000 people with scleroderma in the UK. The complex nature of the condition can often lead to misdiagnosis, so the true number of people affected may be much higher.

  • The onset of scleroderma is most frequent between the ages of 25 to 55 but it may affect any age group, from infants to the elderly.

  • The exact cause or causes is still unknown. Factors other than gender, such as race and ethnic background, may influence the risk of developing scleroderma, as well as the age of onset, and the pattern or severity of internal organ involvement.

  • There are 2 main groups of scleroderma, and within are further subsets:

  1. Systemic sclerosis – the systemic form of scleroderma, which affects the internal organs as well as the skin.

  2. Localised scleroderma – a type of scleroderma that affects specific areas of skin and underlying tissues, but does not involve the internal organs.

   

  • Symptoms can vary widely from person to person, but usually include hardening of the skin, swelling of the hands and feet, joint pain and stiffness and blood vessel damage leading to a physical over-reaction to cold or stress. The heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system can all be affected resulting in a variety of other symptoms, some of which can be life-threatening or cause physical disability.

  • According to their severity, the symptoms of scleroderma can be treated with drug therapy, physical therapy, surgery and self-management techniques.

  • There is currently no cure but proper treatment and management can make it possible for many people with scleroderma to lead full and productive lives.

   

  Comprehensive information on all aspects of scleroderma is available in our booklet:
  Understanding and Managing Scleroderma

   

  More detailed information on different problems in scleroderma can be found in our information leaflets.