Shortness of breath, dry cough, fatigue

It depends. It’s hard to say for sure how scleroderma-related interstitial lung disease (ILD) may affect you. The most common ways are:

  • Making it hard to breathe
  • Making you tired
  • Giving you a cough
  • Giving you Raynaud’s phenomenon, which makes your fingers and toes cold or numb
  • Making your hands stiff
  • Giving you joint pain
  • Making you not sleep well
  • Cause problems with nutrition
  • Make you feel depressed
  • Changes to your job/work life
  • Changes to your relationships and social life

Scleroderma, also called systemic sclerosis, is a rare autoimmune disease. It can affect just about every part of your body. But it’s hard to tell from person to person what it might affect. Because of that, it can look different from person to person. The things above are just the most common ways that scleroderma-ILD can affect you. Some people may get things that aren’t on that list. Some people may not get any of the things on that list.

If you do get any of the things on that list, they can affect your life in a lot of ways. Being tired, in pain, or out of breath a lot of the time makes it hard to do your normal day-to-day activities. Some people might find it hard to go up a flight of stairs. Other people might have trouble opening jars.

A lot of people with scleroderma-ILD end up needing a caregiver like a family member to help them with their daily activities. You might also need to plan for more doctor visits. These kinds of changes can affect your social life and work commitments. A lot of people end up having to change jobs or may eventually have to stop working.

Your mental health is also important to consider. Having a condition like scleroderma-ILD can take a toll on your mental health. Try to keep track of how you’re feeling, and reach out for help if you think you need it.

Talk to your doctor about how scleroderma-ILD may be impacting your body and lifestyle. Sometimes the side effects from medications used to treat scleroderma-ILD can also affect your life. If you’re taking medicine for your scleroderma-ILD, talk to your doctor about any side effects you get. They may be able to help you find other ways to improve your well-being.


Scleroderma-ILD can affect you in a lot of ways and change how you live from day-to-day