Newly diagnosed with Systemic Sclerosis

There are two main types of systemic scleroderma (more commonly known as systemic sclerosis – SSc).

• Limited Cutaneous Systemic Sclerosis: (Limited SSc) Comes on gradually; affects only some areas of your skin, generally the hands and telangiectasia on the face; organs may also be affected, particularly the lungs in the form of pulmonary hypertension.

• Diffuse Cutaneous Systemic Sclerosis: (Diffuse SSc) Comes on suddenly; commonly affects more of the skin than limited cutaneous; the organs are also commonly affected, often the heart and lungs through fibrosis.

How will having systemic sclerosis affect me and my life?

Everyone is different. It may be that you will be able to lead a normal life, as it depends on the severity of your scleroderma. People who are more severely affected (for example those with lung involvement, or limitation in hand function) are often restricted in what they are able to do. Discuss this with your doctor or nurse specialist who may be able to help.

Is systemic sclerosis life-limiting?

At present, scleroderma cannot be cured. However, there is always something, which can be done to help. This is because there are effective treatments for many of the different manifestations of scleroderma.

Some people do die from scleroderma, for example those with severe lung, heart or kidney involvement. However, most people with scleroderma do not die of the disease, and many live a near normal life.

Some symptoms may improve. For example, some people find that their Raynaud’s improves, perhaps because they become expert in knowing how to avoid situations, which provoke Raynaud’s attacks. Also, especially in patients with the diffuse cutaneous type of scleroderma, skin thickening often reduces after a number of years. However, it is possible that symptoms may worsen, and if this happens then you must seek medical advice to check things out further.

Scleroderma can spread to other parts of the body. For example, the extent of skin involvement may progress in people with the diffuse cutaneous type of scleroderma. Also, it is possible that scleroderma can go on to involve what are called the internal organs (including the lungs, heart and kidneys). For this reason it is important to report any new symptoms to your doctor, and to have regular checks (for example of the heart and lungs) at the hospital.

What does treatment look like?

Many different medications are available. For instance for Raynaud’s, the G.I. Tract, lung, kidney and muscle involvement.

In addition, there are a number of treatments other than drugs. For example, physiotherapy (with stretching exercises), and camouflage or laser treatment for telangiectases (the red spots which can occur on the face and arms). Always ask your doctor about the different treatments available.

What can I do at home to help my symptoms? 

Everyone is different, and management of scleroderma symptoms will often involve a combination of drug treatments, medical management and lifestyle changes. Visit our pages on managing your scleroderma symptoms for more information.