More awareness of scleroderma needed

[Posted: Tue 23/03/2010 by Deborah Condon www.irishhealth.com]

People with the circulatory condition, Raynaud’s, need to be aware of the potential connection between it and the rare but critical disease, scleroderma, the Irish Raynaud’s and Scleroderma Society has said.

According to the society, at least 350,000 people in Ireland have Raynauds, a debilitating circulatory condition which causes the fingers or toes to become white and numb in an over-reaction to cold or stress.

Those with the condition can learn to control it by using warming devices. However in 2% of cases, Raynaud’s is a precursor of the disease, scleroderma.

Scleroderma, which literally means ‘hard skin’, is a rare disorder of the body's connective tissues. It damages the cells that line the walls of the smaller arteries, such as those in the fingers and toes, and causes fibrous tissue to develop in the skin.

It is thought to occur in just one in every 10,000 Irish people, however the society emphasised that the true number affected is unknown because so little research into its prevalence has been carried out.

Early diagnosis of scleroderma is essential in order to start treatments that can prevent the worst developments. Diagnosis begins by defining those who have Raynaud’s, along with some other significant symptoms.

“We want to ensure that more people are aware of the symptoms of these illnesses and consult their doctors earlier. We would like to see GPs better informed so they can make a quick and accurate diagnosis and refer on to a relevant specialist,” explained Ann Tyrrell Kennedy, CEO of the society.

Both Raynaud’s and scleroderma will be discussed at the society’s annual patient conference next month. Speakers will include some of the top rheumatologists in Europe.

The event takes place in Dublin’s Stillorgan Park Hotel on Saturday, April 24, from 10am to 4.15pm. Presentations will include how to modify your lifestyle to live comfortably with the conditions, how to protect the teeth and eyes and how to improve digestion.

All speakers will be available for questions.

Entrance to the conference is free, but booking is required. Hand and foot massage will also be available free, along with information and samples. Hand warmers and other heating aids and supplies will be available for view and sale. Comfortable shoes will be displayed and there will be demonstrations of camouflage make-up. A hot lunch is available for €20.00. Pre-booking for this is essential.

The society added that networking will be supported, especially for those who attend alone.
For reservations or further information, call the society on (01) 202 0184 or email info@irishraynauds.com.

See also http://www.irishraynauds.com

Scott_Tirrell  Posted: 29/03/2010 22:28

Many people are not aware of a treatment for scleroderma, involving an antibotic called Minocin. Information regarding this treatment can be found at: www.roadback.org. This treatment is also used for scleroderma, rheumatoid arthritis, lupus, and fibromyalgia. Obviously, one should consult his or her doctor concerning any treatment, but this website is a good place to start in looking for information regarding this treatment.

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