Newly diagnosed with Localised Scleroderma

There are many different types of localised scleroderma (also known as morphoea), which vary significantly in terms of their severity. It depends on how much of the skin is involved, whether any structures beneath the skin such as fat, fascia, muscle and bone are affected; and whether the condition is active and progressing.

How will having localised scleroderma affect me and my life?

Localised scleroderma can affect various parts of your life and may mean that you must spend more time thinking about certain areas, to ensure that all actions and potential outcomes are well-considered.

• Emotional Wellbeing: the psychological impact of developing changes to the colour of the skin and to the shape of a limb or the face can alter self-confidence, cause anxiety and be very challenging. In addition, changes to your lifestyle can be stressful, due to limitations in what you can do daily or simply due to taking medications. This can take a toll on your mental and emotional wellbeing, and it is important that you have someone to talk to, be that friend, family or the SRUK Helpline.
• Employment: by law, you do not have to tell your employer about being diagnosed with localised scleroderma. Some of our community report that it was more practical for them to do so, and that their employer was able to better support them after being informed, however everyone’s circumstances and preferences are different.

Is localised scleroderma life-limiting?

In most cases, localised scleroderma does not cause any life-threatening complications.

Severe linear disease can have an impact on mobility if it crosses joints and or causes muscle loss and limb asymmetry. In some cases, pansclerotic disease can result in significant disabilities requiring a wheelchair or modifications to the home.

What does treatment look like?

The aim of treatment is to stop progression, shorten the duration of disease and avoid tissue damage. Several courses of treatment may be needed over a lifetime, especially when localised scleroderma begins in childhood. There is no “cure” for localised scleroderma, but in most cases, it is not a serious condition. It is generally thought to get better by itself, but this may take many years. There are several treatment options available, that will vary depending on the type, extent and depth of involvement, the activity of your condition and your wish (or not) to be treated.

Treatments will work best when you play an active role alongside your healthcare team. It takes time and persistence, but you should feel the benefits if you can:

• Learn about your medicines and how to take them.
• Talk to your doctor about medication side effects. They might be able to change your prescription or help you feel more comfortable.
• Keep up with the exercises recommended by your physiotherapist and ask for advice if they are too hard or not working for you.

What can I do at home to help my symptoms? 

Routine skin care is essential when you have localised scleroderma. Keep your skin well-moisturised and avoid highly fragranced soaps.