Silver jubilations as charity celebrates 25 years of achievement
Dr Ian Gibson MP joins the Prime Minister in congratulating the Raynaud’s & Scleroderma Association as it celebrates its Silver Jubilee with a parliamentary reception, supported by Schering.
Dr Gibson says: “I heartily congratulate the Raynaud’s & Scleroderma Association on its Silver Jubilee. The research it has supported so far has greatly influenced the way both conditions are treated today and it has greatly contributed to patient welfare working towards early and accurate diagnoses. I wish them another equally successful 25 years.”
The Prime Minister adds: “I would like to pass on my best wishes to the Raynaud’s & Scleroderma Association on the occasion of its Silver Jubilee. The work of the Association over the last twenty five years in developing awareness and research about these conditions has been invaluable.
“I wish you every success for the next 25 years and hope that medical science can progress both treatment and cure. Thank you for your hard work and commitment.”
Raynaud’s, a common condition which is caused by interrupted blood flow to the extremities, such as fingers and toes, affects one in 10 women in the UK to some degree.
Scleroderma is a much more serious and potentially fatal condition of which Raynaud’s is usually the first symptom, although only a very small minority of people will develop the condition, which leads to stiff, leathery skin and which can cause internal scarring.
At the parliamentary reception marking the Silver Jubilee, the Association is celebrating its achievements, which include raising more than £9 million for welfare and research projects such as improving service provision, access to treatment and reducing mortality.
But the Association is firmly looking to the future now.
“We are continuing to focus our efforts on further improving the quality of patient care provided across the UK and striving to achieve universal access to the best treatment in the next 25 years,” says Anne Mawdsley MBE, chief executive and founder of the Association.
“We also want to raise awareness of the conditions among the general public and healthcare professionals to ensure early and accurate diagnoses of the conditions.”
Robert Hite of Schering adds: “We support the efforts of the Raynaud’s & Scleroderma Association wholeheartedly to increase the understanding of the conditions, so that patients are diagnosed quickly and accurately and have the access they need to potentially life-saving treatments.”
Over the next 25 years the Association hopes to work on the folloewing aims:
1.) The referral pathway: enabling early and accurate diagnosis
The work of the Association continues through awareness campaigns to highlight these devastating diseases to both the public and medical practitioners. Facilitating timely and accurate diagnosis benefits patients – this is always the most important aim
2.) Ensuring high quality patient care
The Raynaud’s and scleroderma community has come a long way in the past 25 years with advances in the provision of expert centres being one notable improvement. There is a need to make sure that all patients when necessary have access to properly funded specialist centres, independent of any local booking systems
3.) Universal access to the best treatment
Once at a specialist centre, patients should have the best evidence-based treatments available to them, irrespective of their postcode
Notes on the event:
1. Raynaud’s
Raynaud’s is a distressing condition affecting more than 10 million people, mainly females, in the UK. Approximately 10% of women in the UK suffer from Raynaud’s to some degree. Many sufferers have never seen a doctor as they are unaware that their condition has a name or that there is anything that can be done to help.
In this condition, the blood supply to the extremities, usually the fingers and toes but sometimes also the ears and nose, is interrupted. During an attack they become first white and dead looking. There may be considerable pain, numbness or tingling.
An attack will often be triggered by exposure to the cold, any slight changes in temperature or touching cold objects. Emotions, such as anxiety, may also play a part as can smoking.
2. Scleroderma
Scleroderma is a much more serious, potentially fatal disease of which Raynaud’s is usually the first symptom – hence the link between the two conditions. Scleroderma affects approximately 7,000 people, mainly women, in Britain and there is no cure.
It is a disease of the immune system, blood vessels and connective tissue, causing the skin, usually of the hands and feet, to become stiff, tight, leathery and shiny. This is because of swelling and then thickening of the connective tissue which becomes fibrotic or scarred. Internal organs can also be affected in a similar way. Lung involvement is presently the greatest cause of death in scleroderma but new treatments are now available which can help to alleviate the symptoms and give patients a better quality of life.
Although more than 95% of patients with scleroderma have Raynaud's, the chances of someone with Raynaud's developing scleroderma is very small. It usually begins between the ages of twenty-five and fifty-five.
3. Raynaud’s & Scleroderma Association
The Raynaud’s Association was founded in 1982 by Anne Mawdsley MBE and in 1990 changed the name to become the Raynaud’s & Scleroderma Association because of the close link between the two conditions.
4. Anne Mawdsley MBE
At the parliamentary reception, Anne Mawdsley is also launching her new book “Scleroderma – the inside story” aimed at people affected by the condition and their relatives as well as healthcare professionals.
"This excellent book will give you information, knowledge, hope and insight into both Raynaud's and scleroderma. It provides in a most readable manner, up-to-date information on all aspects of these diseases, is full of practical advice and hope and I recommend it strongly to patients," says Professor Dame Carol Black