Stakeholder Information — Irish Raynaud's and Scleroderma Society - carers home

By: Irish Raynaud's  05/12/2011
Keywords: Scleroderma Society, Systemic Sclerosis,

Carers Home Page

If you are caring for someone with Scleroderma, or for someone with Raynaud’s, you need to know first of all that these conditions affect a lot of different body systems. The person you are caring for may have symptoms that they have not told their doctor about, and you should be alert to a variety of problems that may occur. Many or most of these may be related to Scleroderma.

Raynaud’s

The Scleroderma patient will almost certainly have Raynaud’s, probably quite badly, and so please visit the Patient Information page (Managing Raynaud’s) on this website for help with this. Should your patient be unable to tell you if he/she is cold, please check the feet for white or blue toes, and for sores that take a long while to heal.

Heating aids

Make a list of the products required and send it, with a cheque or postal order made out to the IRSS for the full amount, to The Irish Raynaud’s & Scleroderma Society, Paradigm House, Dundrum Office Park, Dundrum, Dublin14.

What is effected by scleroderma?

The following body systems are commonly affected by Systemic Sclerosis (Scleroderma). The entire digestive system, for instance, is usually affected, causing difficulty in swallowing, reflux, bowel problems, and sometimes incontinence. Please visit our Scleroderma pages for more information:

  • Swallowing
  • Reflux
  • Digestion
  • Bowels
  • Lungs
  • Heart
  • Skin
  • Joints
  • Kidneys

Dry Eyes

When the eyes are very dry, this is usually a sign of an associated condition known as Sjögren’s Syndrome. Please see our Associated Conditions page for more information on this painful symptom.

Foot Care

It is recommended that people with Raynaud’s and Scleroderma have their feet attended to by a qualified podiatrist. The nails may need particular care, and ulcerations are likely on the toes.

The Gut

Problems with the gut are extremely common in Scleroderma patients and yet they are reluctant to discuss these with their doctors. Problems may include loss of weight, diarrhoea and constipation, improperly closing sphincters, and failure to digest food properly. Please ensure that the doctor knows about these problems as help is available.

Resources

Here you will find resources, downloads, and links to enable you to help the person you are caring for to manage his or her condition better. We also encourage you to contact us for information not currently found on this website.

Want to nominate someone as Carer of the Year? We will shorly give you a link and will be able to get the details and download a form.

Keywords: Scleroderma Society, Systemic Sclerosis,

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05/12/2011

Stakeholder Information — Irish Raynaud's and Scleroderma Society - medical professional home

He had been on the faculty of UMDNJ from 1980-2004 where he had served as Chief of the Division of Rheumatology, Director of the Clinical Research Center and as the W.H. Conzen Chair of Clinical Pharmacology. The cost of the management of systemic sclerosis increases enormously with the increase of disease duration and the damage that the disease causes to cutaneous, cardiovascular, pulmonary, and GI systems.


05/12/2011

Products — Irish Raynaud's and Scleroderma Society

Developed especially for Raynaud's sufferers, HeatBands offer a natural remedy for cold hands, suitable for young and old. They have become popular with golfers, sailors, runners, riders and many others who prefer not to have cold hands.


05/12/2011

Stakeholder Information — Irish Raynaud's and Scleroderma Society - patient home

Wear insulated gloves* Stop smoking* Wear gloves when taking food from freezer cabinets* Stop hanging up laundry* Stop using cold water to wash vegetables/clothes* Wear thick-soled shoes and heavy socks* Wear hats/gloves/wrist-warmers. Your GP, pharmacist, friends, colleagues, and family will all be supportive, but you are the one who has to put on gloves, buy handwarmers, and refuse invitations to football matches.