Raynaud's & Scleroderma Ireland
Paradigm House
Dundrum Office Park
Dundrum
Dublin 14
irishraynauds.com/
Office / Landline:
0818363999
News, Articles & Press Releases
19-Mar-2014Reminder: Raynaud's and Scleroderma Awareness week
Ireland, 19-Mar-2014 /HealthPRZone.com/- Raynaud's & Scleroderma Ireland,

A quick note to remind you about Raynaud's and Scleroderma Awareness week taking place between the 21st - 26th of April.

With an estimated 50% of sufferers not knowing that the condition even exists, our aim is to build awareness among those silent sufferers.

Please see press release below


Raynaud's – Building Awareness Amongst The Silent Sufferers, 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.

NOTES TO THE EDITOR:

Train the Trainer Programme
This programme will attract two electives from transition year classes and educate them on the signs, symptoms and potential treatments for both conditions. These students will then return to their respective schools to teach their fellow students what they have learned.

Background on the Charity; Raynaud’s & Scleroderma Ireland
Raynaud’s & Scleroderma Ireland was founded in 1988 and is the only Irish patient group working with those affected by either Raynaud’s or Scleroderma. It is a registered charity (CHY 9845) and is committed to providing support and information to those affected and their families.

The charity is developing a network of local support groups. Information leaflets are produced which are available free of charge to patients and medical professionals. A support phone line is also provided.
A website provides easily accessible information and Facebook and Twitter pages offer online discussion for those affected by the conditions.

A mail order service and online shop provide reasonably priced heating aids such as hand and foot warmers, wrist warmers and specialised gloves and socks.

For further information, check out:
Website: www.irishraynauds.com
Facebook: facebook.com/ raynauds.scleroderma1
Twitter: @IrishRaynauds

Further information on the Raynaud’s and Scleroderma Conference

The Raynaud’s & Scleroderma Ireland Annual National Conference will take place in the Gibson Hotel, Point Village, Dublin 1, on Saturday 26th April 2014 from 10.00-16:00.

The conference, which is being organized by Raynaud’s & Scleroderma Ireland, is a vital opportunity for all those affected by Raynaud’s and/or Scleroderma to hear presentations by guest speakers on key medical aspects of these conditions.


About the Conference

The theme of this year’s conference is “Empowerment”. Topics include: Why did I get Scleroderma?; Management of the gut in Scleroderma; Diagnosis and treatment of Raynaud’s; Nutrition in Raynaud’s & Scleroderma; Eye Health in Raynaud’s & Scleroderma/Sjögren’s Syndrome; Maintaining mobility in Raynaud’s & Scleroderma; The importance of dental hygiene in Scleroderma; and much more.

Mikaela Kenny | Wall2Wall PR & Events
Office: +353 1 4754833
Mobile: +353 87 9322834


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For further information
Raynaud's & Scleroderma Ireland
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Paradigm House
Dundrum Office Park
Dundrum
Dublin 14

Email: click to reveal
www.irishraynauds.com/