Raynaud's & Scleroderma Ireland

Charity Description :

Raynaud's & Scleroderma Ireland is a charity, founded in 1988, to provide information and support for people affected by these Raynaud's, scleroderma and other linked conditions.

The charity co-funds a clinical nurse specialist at St Vincent’s Hospital, supports research and is developing local support groups.

Raynaud’s is a common condition affecting one in 10 people and becomes evident when extremities, usually fingers, change colour in response to exposure to the cold or stress. Fingers will firstly go white due to a lack of blood flow, then change to blue as the blood vessels dilate to keep blood in the tissues and finally to red as the blood flow returns. Whilst Raynaud’s is generally a very manageable chronic condition, it does need to be treated seriously as complications can occur if the condition worsens and ulcers develop.

Raynaud’s can also be a sign that you may be at risk of developing a more serious connective tissue disease, most commonly scleroderma or perhaps lupus. The potential for developing these conditions can be identified by a simple blood test called an ANA (anti-nuclear antibody) test and this can be done by your GP.

As some 10% of people affected by Raynaud’s may develop underlying diseases over time, it is important that this test is done. The earlier that a condition like scleroderma is diagnosed, the earlier appropriate treatment can commence and the better such conditions can be managed.

The Society is dependent on the support from the public for its work, so please consider making us your charity to support.

Charity Overview :

• Phone lines offering support and advice
• Information brochures for sufferers, medical professionals, family and friends
• Support of a specialist nurse
• Annual Conference includes talks by medical professionals; reflexology; hand massage, courtesy of The Irish Red Cross; heating aids, gloves, socks etc; specialist footwear
• Provision of diagnostic equipment for rheumatology clinics
• Provision of treatment equipment for Our Lady's Children's Hospital Crumlin
• Regional educational meetings on managing a long-term illness
• 2 newsletters yearly with up to date information and comments by readers
• Local support groups where people can meet others with similar problems, sharing experiences and tips on coping
• Supports research
• Local Support Groups to share experiences and tips on coping

Charity History :

The Irish Raynaud's Society was founded in 1988 in response to the lack of support and information available for sufferers.  Two women with Raynaud's met and created a patients' support group.  Largely due to their efforts and determination there is now far more help available.

The Society's first AGM was held in October 1990 and the first Annual Conference was in April 1992.

Since the start of the Society the dedicated work of volunteers has ensured that no phone call went unanswered and no-one was left alone and in fear.

The name was changed to The Irish Raynaud's & Scleroderma Society to include those suffering from scleroderma, which is an associated condition.

The later name change to "Raynaud's & Scleroderma Ireland" adds the clarifying comment "working with people affected by Raynaud's and linked conditions" thus embracing Lupus, Sjögren’s syndrome and other conditions.