Living With Sarcoidosis

If you've been diagnosed with sarcoidosis, you might feel anxious and unsure about your health or have symptoms that interfere with your daily routine. After you're diagnosed with sarcoidosis, it’s important to find a specialist who has experience with sarcoidosis. It can also be helpful to find a community or support group of others with sarcoidosis.

What to Expect

People with sarcoidosis can have very different symptoms from each other. Many people with sarcoidosis have breathing problems, but after treatment starts, symptoms may improve over several months. If sarcoidosis affects more than one organ, you may need longer treatment or combinations of medication. If your eyes are affected, you need to see an eye specialist to keep from losing your vision. Always talk to your doctor about any new or worsening symptoms you experience. With good treatment and follow-up, your symptoms may improve, and you may feel more like yourself.

Managing Sarcoidosis

If you have sarcoidosis, you may need to work with doctors and specialists in different areas of healthcare to manage your disease and symptoms. Often starting a new medication can come with new side effects. Make sure you talk about your symptoms with your doctor. Because many of these medication side effects go away after you adjust to the medication, your doctor may ask you to keep taking the medication for a while longer to see if your sarcoidosis improves. If your symptoms last a long time (even with medication) and you cannot work, make sure to discuss this with your doctor.

Depression and anxiety affects many people with any illness, including sarcoidosis. Tell your doctor if you have these feelings. Treatment for anxiety and depression may actually make your sarcoidosis treatment more effective.

Finding Support

Managing sarcoidosis is easier when you get help from your health-care providers, your family, and your friends. Hearing from those who understand the disease can be a vital resource for people with a new diagnosis who don’t know what to expect, and resources exist to help you find answers.

If you feel alone and isolated, support groups can help. It feels good to talk with others who understand, which has a positive impact on your health. Explore American Lung Association support groups by finding and attending a Better Breathers Club meeting in your community.

The Lung Association recommends patients and caregivers join our Living with Lung Disease Support Community to connect with others facing this disease.

The Lung Helpline (1-800-LUNGUSA) is open seven days a week and is staffed by experienced registered nurses, respiratory therapists and certified tobacco treatment specialists. We are here to provide you with the support you need and the answers you are looking for.

You can also learn more from our partner organization the Foundation for Sarcoidosis Research (FSR).