Irish Raynaud's & Scleroderma Society

Caring for someone with scleroderma

Main Aims

Your main aims when caring for someone with scleroderma are to keep them warm and comfortable - see information given under Raynaud’s Carer - and to ensure that their scleroderma is treated as efficently and effectively as possible.  This means that you will need to be in touch with the specialists relevant to the person you are caring for.

As scleroderma varies so much from one person to another only you will know which specialists are important for your sufferer.  Some people will need to be treated by a rheumatologist, and a cardiologist.  Others will need to be seen by a respiratory specialist.   Other areas may need to be covered.

One of the challenges will be to ensure that each specialist being visited has access to the updated information and test results from other specialists, particularly if another hospital is involved.

Be Alert

Be alert for unusual symptoms and don’t ignore changes.  It is particularly important to watch for signs of breathlessness as this may indicate a condition call Pulmonary Arterial Hypertension - PAH.  Report unusual symptoms to your GP, your specialist or your local rheumatology clinic.

PAH

This is a serious condition and needs to be treated as a matter of urgency.  Early diagnosis is important and it is considered advisable for all scleroderma sufferers to undergo an echo-cardiogram once a year.  If necessary they will then be referred to a respiratory specialist.  Please feel free to telephone us at 01 2020184 or email us for more information and for help and support.

Digestion and Nutrition

If the digestion is affected the diet will need careful consideration.  We have a patient information leaflet on Digestion and Nutrition in Scleroderma and this is available free of charge.  Please contact us and we will send you a copy.  General guidelines include avoiding food that is dry, lumpy, spiced or overly rich.  Small meals eaten frequently may be preferable to large meals.

Exercise

Exercise is important for scleroderma sufferers.  Hand stretching and all stretches are essential to help maintain mobility and to reduce the discomfort and pain caused by stiffness.  Facial exercises will help if the face is affected.  Regular physical activity will help to prevent the person feeling very cold and some physical activity should be inculded in the daily routine.

Care for Yourself

It is important that, as a carer, you find some time to care for yourself.  You will not be able to look after your scleroderma sufferer if you become ill or exhausted.  Join a carer’s group and check out the information available on the following websites:

Age Action www.ageaction.ie

Carers Ireland www.carersireland.com

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.

Caring for Carers www.caringforcarers.org

You can also contact us for support and information by telephone at 01 2020184, or by email