If you’ve been diagnosed with systemic sclerosis interstitial lung disease (SSc-ILD), you might wonder what you can do to take care of yourself beyond taking any medicine your doctor has prescribed. While experts say we need more evidence to show how well these treatments work, there are lots of supportive care options that may help ease your symptoms, improve your quality of life, and give you a sense of control.
Find Support for Systemic Sclerosis Interstitial Lung Disease
Perhaps the best thing you can do to start with is what you’re doing now. Learning more about your disease is an important first step. Good sources for more information and ideas about your condition and supportive care options include:
- Support groups
- Online forums
- Pulmonary rehabilitation programs
- Specialist ILD centers
- Specialist ILD nurses
In addition to understanding SSc-ILD and ways to manage it, connecting with experts or other people who have SSc-ILD can be a good source of emotional support.
The goal of pulmonary rehab is to improve lung function and symptoms to improve your quality of life. But pulmonary rehab programs are also a great place to connect with other people who have chronic lung conditions, including SSc-ILD or other forms of interstitial lung disease and pulmonary fibrosis.
Most pulmonary rehab programs involve small groups that meet regularly on various topics including:
- Education about your lung condition and treatment
- Exercise classes, including aerobic and resistance training
- Breathing techniques and exercises
- Nutritional advice
- Stress management
- Emotional support
There’s evidence that pulmonary rehab can lead to benefits, at least in the short term. These include improvements in:
- Exercise ability (often measured as the distance you can walk in 6 minutes)
- Health-related quality of life
It’s not clear how long pulmonary rehab works, but it works better if your SSc-ILD is less severe when you start. It’s a good idea to start early.
If you have SSc-ILD, it’s often hard to get enough oxygen. You may feel like you can’t catch your breath. If the doctor finds that you’re having trouble getting enough oxygen even while at rest, they may recommend supplemental oxygen. The hope is that this oxygen support can help with your ability to function and quality of life, but doctors don’t know how much.
If you feel like you’re really struggling to breathe and you don’t have oxygen support, ask your health care team if it might be a good idea. There may be different options to consider. For instance, it might help to have oxygen support during exercise and other activities. Supplemental oxygen might also help at night.
Symptom Relief for Systemic Sclerosis Interstitial Lung Disease
SSc-ILD often comes with a range of symptoms and complications, and there may be treatments that can help you with those even if they don’t change the underlying disease. Sometimes you might hear this type of treatment called palliative care because the goal isn’t to make the disease slow down or go away but to help you feel better.
You may want relief from symptoms including:
- Shortness of breath (dyspnea)
Ask your doctor if there are medicines, counselors, or other strategies to help you with symptoms related to SSc-ILD.
For people with SSc, ILD is a common problem. The severity and nature of these lung problems vary a lot from one person to the next. Treatments and supportive measures can help. But there is no cure for SSc-ILD. The condition often gets worse over time and is a leading cause of death for people with SSc. It's also unpredictable.
If you have SSc-ILD, you may find you are living in constant worry that your condition could get worse. While conversations about death and care at the end of your life can be difficult, it’s a good idea to talk about these things early on, before you find yourself approaching the end of your life. By talking with your doctors, loved ones, and other caregivers about what your preferences are, it can help you to ensure that your needs and wishes are met.