FAQs

It depends on your symptoms. Different treatments are used to manage the many symptoms of scleroderma. They should lessen the impact the disease has on you. If you're unhappy with the medications you're taking, or if they make you feel unwell, tell your doctor/nurse. They will work with you to make sure you're comfortable with the medication you're taking.

While the symptoms can affect how you live your life, they don't have to rule it. Your doctor or nurse will be able to help you manage your symptoms and make the changes you need without compromising on the things you enjoy. They have the knowledge and experience to address any questions you have (or at least to point you in the right direction), so don't be afraid to ask.

It's up to you. It depends on how you feel and how your symptoms affect your ability to perform your duties at work. Speak to your employer about any concerns you have and talk about how flexible working could benefit you both. Do some research into your workers' rights as well, just so that you're well prepared. Make sure you know what you're entitled to, as well as any benefits that may help you along the way.

Light exercise can help your lungs continue to work well¹. It can be tempting to avoid exercise because you think it will make you breathless or worsen your condition. But this will make you less fit and normal activities will become even harder. It's a slippery slope. Ask your doctor or nurse or a physiotherapist to help you make an exercise plan. Then you can stay active, confident in the knowledge that what you're doing is safe and in keeping with what you're capable of.

Genetics and genes may play only a small part in the risk of getting scleroderma. Those who have a close family member with scleroderma, for example a child, parent or sibling, have a slightly higher risk of developing scleroderma than everyone else. Scleroderma occurs more frequently in families with scleroderma (1.6%) than in the general population (0.026%)². It is not a disease that you can pass directly to your children or inherit from your parents.

There are some treatments for pulmonary arterial hypertension that can slow down its progression. But as yet, no drugs can cure scleroderma or the lung fibrosis it causes. Scientists are working on it. For now, your doctors might suggest some medications that can make your symptoms easier to manage.^3,4

People are affected by scleroderma in different ways. It can be difficult to predict how it will progress. Don't be afraid to ask your doctor or nurse this question. It's an important thing to ask.

Around 1 in 10 people with scleroderma might develop fibrosis that reduces their lung capacity (measured by FVC) and affects how they go about their life. In very serious cases, these symptoms can affect how long they live.^3,5

Pulmonary arterial hypertension (PAH) can have an impact on how long somebody with scleroderma will live, but it depends on the type and nature of PAH.^4,6

Your doctor will be able to give you more information that's specific to your situation.

People are affected by scleroderma in different ways. It can be difficult to predict how it will progress. Your type of scleroderma, your symptoms and how they progress can give an idea of what might happen in the future. Don't be afraid to ask your doctor/nurse this question. It's an important thing to ask. Also, if you notice any symptoms that could be related to your heart or lungs, tell your doctor as soon as you can, because it is important to start treatment for some conditions without delay.

It can be difficult to fit your medical appointments in around your other responsibilities. But it is important to find a way to get there. The tests and check-ups give the doctor an idea of what's happening and how you're doing. It can help to talk with family, friends and colleagues about your scleroderma. They will be able to find ways to help you make it to your appointments. Don't be afraid to ask. Most people will be glad to have found a way to help you.

Scleroderma is not an infection and cannot be passed directly from one person to another like chicken pox or flu. Scleroderma is not contagious.

We know that caregiving does impact relationships, careers, finances and a person’s health and well-being both positively and negatively^7-9.

But the answer is that every caregiver’s experience will be unique. You may be a spouse, a child or a friend caring for someone with scleroderma. And given the variety of symptoms scleroderma can cause, everyone will need different types and levels of help. Whatever you do and whatever your role, how you define it is up to you.

People with scleroderma can develop symptoms that have an impact on their relationship. Skin tightening, discomfort, pain, and other symptoms can affect the sex life between partners where one or both has scleroderma.¹⁰

 If these symptoms become a problem, talk it over with your partner and consider talking to your doctor. Some women with scleroderma also have another autoimmune condition called Sjörgren’s syndrome.¹¹

This means that their immune system is attacking the glands that make fluids. Women with Sjögren’s syndrome can experience vaginal dryness, but this can be overcome by using vaginal lubricants.

Around 8 out of 10 men with scleroderma experience erectile dysfunction.¹² This can be for several reasons, but particularly as scleroderma can cause poor circulation. Erectile dysfunction is a common problem that can be addressed by the doctor or a urology specialist.

With sexual problems, it is a good idea to try and provide support for each other, while seeking help from the doctor/nurse. It might be a bit embarrassing at first, but it is something you can work at together.

The doctors/nurses should be able to provide a general outline of when it is best to take the medicines. Your local pharmacist can also help with this too. They may give you a pill box to help you keep the medicine in order and remember when each has been taken. It can also help to keep a list of the current medicines, as they may change every now and then.

Support varies from area to area and country to country. A good place to start is to ask the doctor or nurse at the clinic the person you care for attends. You could also look online to find either a local or national scleroderma patient organisation. You don’t need just to look for other scleroderma caregivers. There is a lot of general support available for caregivers as well.

Contact your local authority/ office who will be able to advise you not only what the person you care for is entitled to, but also if there are any benefits you may be able to claim.