Scleroderma

Scleroderma is an incurable autoimmune disease, which causes skin and tissue around the body to thicken. There are a two main types of scleroderma; the mildest form called localised scleroderma, and a more serious form called systemic sclerosis, which may affect the tissues of the internal organs in addition to the skin.

Only around 19,000 people in the UK have a scleroderma diagnosis, which makes it quite uncommon. Scleroderma usually affects people between the ages of 25 and 55, but it is not unheard of in children and people much younger than this. Scleroderma is much more common in women than men.

Scleroderma can lead to disability and, depending on which type of scleroderma a person has, the condition can be life-limiting if organs are affected. However, there are treatments to help relieve symptoms of scleroderma and enable those with the condition to live well.

Read more about scleroderma.

The immune system is a network of cells and organs in the body, which work together to fight off invading infections, bacteria and organisms to keep the body healthy. An autoimmune disease occurs when the immune system mistakenly attacks the body itself, such as tissues, joints, bones, or organs. This immune system dysfunction is what causes scleroderma, but nobody knows for sure why this occurs for some people and not others. It’s thought that genetics may be involved, and you are more likely to develop scleroderma if a family member has the disease. A person who has one autoimmune condition is also more likely to develop another autoimmune condition, for example, there is a link between Raynaud’s disease and scleroderma.

Explore what causes scleroderma.

The two main types of scleroderma are:

The two main types of scleroderma are localised or systemic scleroderma.

Localised scleroderma symptoms include:

Systemic scleroderma is generally considered to be a more serious form of the disease. Its symptoms may include:

When skin thickens, it becomes very tight and may feel uncomfortable and painful. This may restrict movement of the affected part of the body. For some people living with scleroderma, the hands and feet may be affected, which sometimes affects a person’s ability to pick things up, grab, walk, etc. Some people also find they have scleroderma of the face, which can physically change their appearance, and may be a difficult symptom to deal with.

Scleroderma can be difficult to diagnose. Some GPs rarely see the condition, but they are likely to refer you to a consultant. You are likely to see a rheumatologist initially. The thickening of skin is often the key to a diagnosis, but other tests may be performed such as a blood test for autoantibodies, which may suggest the person has an overactive immune system, as seen in scleroderma. Read more information on the process of scleroderma diagnosis.

Scleroderma is likely to affect a person’s life in various ways, depending on their symptoms, and which type of scleroderma they have. Here, we list some of the challenges that a person living with scleroderma may face and ways they can help to combat these head-on.

For some people, scleroderma may get better on its own, depending on the type of scleroderma they have, but systemic scleroderma may progress over time. There are a variety of treatments for scleroderma which may be available, depending on a person’s symptoms, such as drug medications, localised or topical treatments, therapeutic programmes such as physiotherapy, and many self-care treatments.

The scleroderma treatments listed below are for some of the more common symptoms – this is not an exhaustive list, and if you are finding any of your symptoms difficult to manage, it is advisable to talk to your GP or specialist team.

In severe cases of scleroderma, drugs that target the immune system may be prescribed.

Read more about scleroderma treatment.

Daily living aids are products designed to help you with mobility, getting around the home, getting around outside, getting ready and doing chores around the home.

At Healthcare Pro, we are experts in daily living aids. If you have scleroderma, you may find the following daily living aids useful.

If you would like to speak to one of our Occupational Therapists to find if there are any daily living aids that may help you or someone you care for, please email them productadvice@healthcarepro.co.uk or telephone 0345 121 8111.

An adequate, nutritional diet for scleroderma patients is important, whatever type of scleroderma they may have. People with systemic sclerosis are likely to have digestive issues and may experience weight loss as a result of their condition, so eating a balanced diet is essential. It is important to get enough calcium, vitamin D, iron and healthy fats. Fibre can help with blood pressure and anti-inflammatory foods such as ginger may help reduce some symptoms of scleroderma. Read more about scleroderma diet.

If a person has coeliac disease as well as scleroderma, they may need to follow a gluten-free diet. Read more about coeliac disease.

Some people take vitamins and minerals as supplements for scleroderma, such as vitamins A, C, D, E, K, folate, B12, zinc and iron. Some people take probiotics to help with digestive issues, or anti-oxidant and anti-inflammatory supplements such as turmeric, selenium and beta-carotene. It is advisable to discuss this with your GP before taking scleroderma supplements.

Scleroderma exercise is important but may feel challenging for some people, for example, if their skin is tight and uncomfortable. Any activity that gets the body moving, within the reasonable limits that a person can manage, is beneficial for joints, muscles, lungs, heart and mind. It is important for people living with scleroderma to obtain advice before starting an exercise programme from their specialist team or a physiotherapist. Read more about how exercise may help scleroderma.

Lots of people who are living with scleroderma are able to work. Some people who have systemic sclerosis that progresses to a more serious stage, may decide to leave work if their scleroderma symptoms make working difficult.

Scleroderma and Raynaud’s UK online community – a forum for people affected by Raynaud’s or the associated condition of scleroderma, to share experiences

Scleroderma Facebook Group – an online support group for scleroderma patients and their families

Coeliac UK – for those living with scleroderma who also have coeliac disease, Coeliac UK provides a wealth of information about the condition

NHS – source of official medical information about causes, symptoms and treatments for Raynaud’s and related conditions

PHA UK – a charity supporting people who have pulmonary hypertension, which may be a complication of systemic sclerosis

Scleroderma and Raynaud’s UK – a charity providing support and information to the millions of people living with scleroderma, Raynaud’s and associated conditions, with an online community and lots of online information about daily life with these conditions

ACE inhibitors

– medication used to treat high blood pressure, which blocks the body producing angiotensin II, a chemical that narrows blood vessels

Autoimmune diseases

– conditions where the immune system attacks the body, mistaking it for an invading virus/bacteria

Coeliac disease

– digestive health condition caused by the immune system reacting to a protein called gluten which is found in wheat, barley and rye, and then attacking the tissues of the gut, causing intestinal damage and an array of unpleasant symptoms

Pulmonary hypertension

– a condition caused by high blood pressure that affects the pulmonary arteries, damaging them and affecting blood supply to the lungs and heart

Rheumatologist

– a doctor specialising in conditions affecting the musculoskeletal system e.g. bones and tissues