Scleroderma
An overview of Providence Health Care's services and resources for patients with scleroderma.
Overview
Scleroderma, also called systemic sclerosis, is a group of rare diseases that make your skin harden and tighten.
It can also affect:
- blood vessels
- internal organs, like your lungs
- digestive system
Scleroderma is an autoimmune disorder. This means your immune system attacks your connective tissue. When this happens, healthy tissue turns into scar tissue. Your body makes too much collagen. This buildup causes fibrosis, or thickening and scarring of tissue.
The first signs of scleroderma often appear in your hands. Your fingers might swell so much that they are hard to move. Your skin may look shiny because it is stretched tightly.
Scleroderma is more common in people assigned female at birth. It usually develops between the ages of 30 and 50.
Diagnosis & testing
If we think you have systemic scleroderma, we will ask you questions and do a physical exam.
We may also order tests. These include:
- Blood tests. These check for antibodies in your blood.
- Chest X-ray or CT scan. These imaging tests take detailed pictures of your lungs and other internal organs.
- Biopsy. We take a sample of your skin and send it to a laboratory. A specialist then looks at it under a microscope.
- Lung function testing. These tests check how well your lungs work. They measure how much air you breathe in and how oxygen moves into your blood.
Treatment & management
There is no cure for scleroderma. Different treatments can ease your symptoms and prevent more damage to healthy tissue.
Treatment options include:
- Avoiding triggers. Cigarette smoke, severe air pollution, and other harmful substances can make your symptoms worse. If you smoke, our Smoking Cessation Clinic offers support to help you quit.
- Vaccination. Common infections can cause further damage to your lungs. Vaccinating against these infections can help reduce your risk.
- Physical therapy. This strengthens your muscles and gives you strategies for daily tasks. If your hands do not work as well as they used to, there are helping tools available. In addition, hand exercises can maintain your range of motion and slow down permanent tightening.
- Oxygen therapy. We may deliver extra oxygen through a mask or small tube in your nose if you are not getting enough.
- Anti-inflammatory medication. These reduce pain and swelling.
- Medicated skin creams and antihistamines. These help with swelling and itching.
- Vasodilators. Scleroderma can prevent your blood vessels from dilating properly. Vasodilators are medicines that help open up blood vessels. They can treat “Raynaud’s Phenomenon”, where your fingers turn pale or blue in the cold.
- Immune-suppressing medication. These medicines attempt to reduce your immune system’s attack on your skin and organs.
- Anti-scarring medication. These can reduce the amount of scar tissue (fibrosis) formation in the lungs.
Clinics that treat systemic scleroderma
Support services
Providence Health Care offers a variety of services to support those we care for. The following services may be of use or benefit to you and your families.
Support for Indigenous Peoples
The Indigenous Wellness Liaison Team is here to support your health journey. Team members offer cultural support and healthcare advocacy. Learn more below or call them at 604-682-2344,62937 or email IWL@providencehealth.bc.ca
Education & resources
Patient-centred help, resources and education about scleroderma come from many sources. Some of them listed here are supplied by Providence Health Care, but other useful resources about scleroderma are available from the community and from online supports.
Patient education
- General Range of Motion (ROM) and Stretching Exercises for Scleroderma
- Hand Exercises For Scleroderma
- Raynaud's Phenomenon (RP)
- Scleroderma Facial Range of Motion Exercises
- Scleroderma Breathing and Ribcage Expansion Exercises
- Scleroderma Oral Care and Facial Range of Motion Exercise
- Skin Care in Scleroderma
- Your Feet and Scleroderma
Useful resources
Patient communities
Clinical trials & research
Advances in treatments are all thanks to medical research. While participating in research is a decision you should make for yourself in consultation with your care team, there is much activity in this area so please ask us about our research programs if you’re interested.
By taking part in research, you can help us all learn more about advancing health outcomes and find better ways to help people live and thrive. While you cannot assume benefit to yourself, your participation can make a difference in improving care for future patients.
The following clinical trials are currently enrolling volunteers. Please ask your care team for more information or contact the research team listed on each study or trial. For other information about research at Providence Health Care, please visit Providence Research.