An estimated 50% of Raynaud’s patients, don’t even know the condition exists
Ireland is to host its first Raynaud’s and Scleroderma Awareness week in April of this year. Raynaud’s & Scleroderma Ireland (RSI) is organising a full programme of promotional, educational and information activities to educate the nation on both conditions and inform the Irish population of the symptoms and treatments associated with each.
Raynaud’s is condition that affects the blood flow, occurring usually during periods of cold or stress. The condition causes loss of blood supply to the extremities, usually fingers and toes, leading to a series of colour changes to the hands and feet. The affected areas generally turn white first, with loss of sensation and loss of dexterity, then blue as the oxygen is used up and finally red as the blood supply returns. For some people, Raynaud’s causes significant problems due to ulceration and gangrene and it is extremely painful. Raynaud’s is a common condition affecting some 10% of the population with Primary Raynaud’s being the most common form. Secondary Raynaud’s occurs in conjunction with a number of autoimmune conditions, notably scleroderma.
Raynaud’s is often the first symptom of Scleroderma. Scleroderma is a rare auto immune disease occurring in 2% of people affected by Raynaud’s. It is a serious Connective Tissue Disease that affects the skin and can also affect major organs. In the worst cases, it can be life threatening. Early diagnosis through an ANA blood test (Anti-Nuclear Antibody) is important, enabling early treatment and leading to best management of the condition,
There is currently no cure for Raynaud’s or Scleroderma. It is the number one priority of RSI to raise awareness of the symptoms of both conditions but also to highlight the most effective life style changes for controlling patients’ symptoms.
Meadhbh Cleary went through a grieving process for her old life when she was diagnosed with Scleroderma, “Living with a disease where there is NO cure, I have to expect the unexpected. I live my life day by day. Having this disease can be difficult. I’m still frightened. My face is changing constantly: I look so different to photos taken a year ago; all of my skin feels so stretched and tight. The really scary part is my mouth is getting so difficult to open. Having this disease can be difficult. I’m not going to lie and say that it’s easy. However, with the right doctors, the right medical team, and the right support, it IS manageable. I cannot stop what is happening to my body, but with support, I can make sure that I understand and plan for it.”
April’s awareness week will approach this goal on three levels:
1. At grass roots, the awareness week will work with transition year students from schools throughout the country on a “Train the Trainer” programme.
2. Throughout the month of March, in the lead up to the R&S Awareness Week, the charity will be in contact with GP clinics throughout the country to make further information on Raynaud’s and scleroderma more readily available to both the medical professionals and to current and potential sufferers. As well as spreading the word amongst the medical professionals, the charity will have their dedicated Support & Outreach nurse based for the entire week in a central location (Dundrum, Dublin) in a temporary Drop in Centre for general public and current patients to come for a free of charge consultation.
3. Raynaud’s & Scleroderma Ireland also plan a number of enhanced services. The team are looking forward to launching a self-management online educational tool as well as their Patient Passport. On April 26th, the Raynaud’s and Scleroderma Awareness Week will culminate in its annual conference held in the Gibson Hotel in Dublin.
For further information on either condition or the awareness week, visit www.irishraynauds.com.