9 questions you may have about scleroderma

You may not have heard of scleroderma before you were diagnosed, or know anyone else who has it. But don't worry – you have come to the right place.

Although the condition is complex, receiving a scleroderma diagnosis doesn't have to be overwhelming.

Many people who have recently been diagnosed share the same concerns and fears. On this page, we answer some of them. If you have other questions, please don't hesitate to contact our Freephone helpline on 0800 311 2756.

For an introduction to scleroderma and its typical symptoms, please visit our what is scleroderma page.

Can scleroderma be cured?

At present, scleroderma can't be cured. However, there are ways to help, visit our treatment page and speak to your doctor or nurse specialist about different approaches that might relieve your symptoms. Remember, 'incurable' does not mean 'untreatable'.

Is it hereditary?

We do not understand why some people, but not others, develop scleroderma. There is a hereditary component, but this is relatively small. To put this in context, if someone has a first degree relative with scleroderma (for example a parent, brother or sister) then the chances of that person developing scleroderma is around 1%.

Will I be able to live a normal life?

This depends on the severity of your scleroderma. Many people with scleroderma lead a normal, or near normal life, although most have to be careful to avoid cold environments.

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. Take a look at how you can manage your scleroderma and if you have any concerns, speak with your doctor.

Will the disease spread to other parts of my body?

Not necessarily. However, it can do. For example, the extent of skin involvement may progress in people with the diffuse cutaneous type of scleroderma.

It is also possible that scleroderma can go on to involve 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 at the hospital.

Will my symptoms improve?

Some symptoms may improve. Some people find that their Raynaud's improves, perhaps because they become expert in knowing how to avoid situations that 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.

Can it prevent me having children?

Many people with scleroderma successfully have children. However, if you would like to plan a family then it is important to discuss this with your doctor. This is because there are certain situations in which it may not be wise to become pregnant. Also, it may be necessary to make changes in your drug treatment because some drugs should be avoided during pregnancy. Visit our pregnancy factsheet for more information.

Do people die from scleroderma?

Many people have a good scleroderma prognosis - they do not die of the disease and live a full and productive life. However, some people do die from scleroderma, for example those with severe lung, heart or kidney involvement.

How can I find a specialist?

Now you have received a scleroderma diagnosis, it is time to consider seeing a scleroderma specialist to ensure you are receiving the best care.

If you received your diagnosis from a specialist, then you are already in the right hands. Your specialist and their team will be able to offer you the best scleroderma management and will refer you to another specialist if you need to be seen by another department.

If you received your diagnosis from your local GP, take a look at our specialist directory. Your GP may recommend a specialist to you but if not, you can ask your GP to refer you to your chosen specialist.

If you need any help in finding the right specialist or receiving a referral, please get in touch with us on 020 3893 5998.

How can I find more support?

Having a strong support network is vital. At SRUK we offer a range of support, enabling you to discuss your diagnosis, find friendship and gain up-to-date information.

Please give us a call on 020 3893 5998 so we can put you in touch with other people who are living with scleroderma. Or visit our online community where you can chat with other people with the condition, their family members, friends and partners.