FEB is Raynaud’s and Scleroderma Awareness Month – U.K.

Raynaud’s Awareness Month – February 2013

We need your support to raise awareness of Raynaud’s
during this special Awareness Campaign

Raynaud’s is a common condition in which blood is prevented from reaching the extremities of the body, mainly the fingers and toes, on exposure to the cold or any slight change in temperature.

A small number of people who have Raynaud’s also develop scleroderma, a disease which affects the connective tissue.

Scleroderma means hard skin but the hardness is not limited to the skin – the internal organs and their blood supply may become damaged.

Scleroderma can be devastating not only for the person who has the condition but also for the families concerned.

We offer a very personal service, always available to answer questions, offer advice, reassurance and support. Further advice can be obtained through the nurse advice lines available to members and part funded by the Association.

Our aims are to promote a better communication between doctors and patients, to disseminate information and to raise funds for research and welfare projects.

• Research is essential if we are to determine the cause and find better treatments in the future.
• Newsletters are issued quarterly giving information on research and treatments which are available.

Publications on Raynaud’s, scleroderma and related conditions are available from the organisation, details of which are on this website.

You can also visit our free support network here where you can learn from other people’s experiences and add your own to the mix.

In order to continue our work we rely on donations. Every penny donated goes towards funding research and welfare projects.

There are 10 million people in the UK with Raynaud’s.

Please contact us with information on any events you may be planning or for ideas which we may be able to help with. We are also very keen to have case studies as this is an area which the Press are interested in. This gives us an opportunity to express how a Raynaud’s sufferer feels and the symptoms which affect their daily lives, especially so at this time of the year – so many people think we just have cold hands. We need to explain that it is much more and through local and national publicity we aim to give people the opportunity to contact others, share ideas and experiences and also to find out more about the work of the RSA and how we can help and offer advice. If you could help with publicity in this way it would be very much appreciated. Putting up posters can also be a good way of spreading the word. We can supply these together with Handy Cards explaining about the condition.

Pages from this website can be downloaded. Leaflets are available by sending a 2nd class stamp to the Association for each leaflet requested (UK only).

Our support network, delivered through HealthUnlocked, is also free and we welcome your comments and questions. It’s a great way to learn more from each other so please join. To ‘like’ the RSA Facebook page click here.

To celebrate the charity’s 30th Anniversary in 2012, the RSA is aiming to raise a total of one million pounds for research between 2010 and the end of 2012. The money will be used to fund several projects into Raynaud’s and Scleroderma.

People with these conditions will be given an opportunity to send in suggestions as to what they feel are the most important areas of research that they would like to see funded. These ideas will then be considered by the trustees and medical advisers. One of the aims is to generate enthusiasm among the medical profession throughout the UK, in order to help find better treatments and ultimately a cure. So far we have raised £850,000 towards our goal but we still need your help.

President of the RSA Dame Carol Black has given the following words of encouragement: “It is a wonderful idea to celebrate the 30th anniversary of the RSA by having a campaign to raise one million pounds for research.

The RSA has been crucial to the progress that has been made to date, but so much more remains to be done.

It is on the common problems – calcinosis, digital ulcers, diarrhoea, bloating fatigue, sexual disfunction – which so blight people’s everyday lives and cause distress and interference with normal activities, that research is particularly needed. This is a great campaign. If we all give a little, whether it be time, money, enthusiasm and/or support, we can get there.”

To find out more click here.

 

For a free information pack call 0800 917 2494 or send an SAE to:
RSA, 112 Crewe Road, Alsager, Cheshire ST7 2JA
Alternatively, email: [email protected]