Advice for Living with Sarcoidosis

Mark, Sarcoidosis Patient - I was in my early 50s backpacking in the Grand Canyon. And as we started to hike out – BAM! I get hit with all these symptoms I've never had before.

Debbie, Sarcoidosis Patient - I was 49 years old. I was experiencing a dry mouth. My lymph nodes were swollen in my throat. My doctor said that it was sarcoidosis.

Mark - I have sacoi-what? I didn't even know what sarcoidosis was. I'd never heard of it.

Gail Harris, Registered Respiratory Therapist - Sarcoidosis is the growth of very small clumps of inflammatory cells on different parts of your body. The cause of this rare disease is unknown and it can affect nearly every organ of the body. However, 90% of cases impact the lungs.

Symptoms may appear in many ways such as shortness of breath, coughing, chest pain, congestion, a rash on the skin, red, irritated eyes with blurry vision, hair loss, painful joints, and fatigue. If you, or a loved one, have any of these symptoms, it's important that you connect with a doctor.

Debbie - Sarcoidosis is not fun, but remember sarcoidosis can be controlled.  It doesn't have to control you. There are some tools that you can use to help you live the life that you want.

Mark - When I first got diagnosed with sarcoidosis, I didn't want to tell anybody what I had. I didn't want to share it with my family because I didn't want to burden them. But what I learned was that it's important to have a support network.

Gail -  One of the best things I did was join a support group with others living with sarcoidosis. Hearing what others were able to accomplish gave me hope to believe that I could actually live with this disease and everything would be OK.

Mark - Adjusting my diet to a healthier menu has made a big, big difference in the way I feel every day, my ability to tolerate meds, and it's helped me to be functional again.

Gail - Exercising will help you tremendously. For me, it helped me to maneuver and move around a lot better than I ever been able to move. Because sarcoidosis has affected my lungs, I am on oxygen and I never go anywhere without it.

Mark - Keep in mind that sarcoidosis is a disease that can change with time, and that means you really need to listen to your body. Make note of the symptoms that you're having and any of the changes that occur, and share that information with your physician.

Gail -  With your doctor, you might find a better way to improve treatment or manage the disease.

Mark - I am living proof that even with sarcoidosis, you can get your life back. I am back on the soccer field. I can take walks in the park with my wife. I can chase my kids around. Life's fun again.

Gail - Sarcoidosis has not stopped me from living. I love living, and you can too.

Mark - Learn more about sarcoidosis, its signs and symptoms, and how you can live your best life at lung dot org slash sarcoidosis. 

Sarcoidosis is a rare disease that causes your immune system to overreact, which can lead to health issues. It can cause lung damage, skin rashes, and eye disease and can affect other organs of the body. But, there are many tools patients with sarcoidosis can use to help improve their quality of life. Learn from these people living with sarcoidosis on how you can manage your disease and take back your life.

Support provided by an unrestricted educational grant from Mallinckrodt Pharmaceuticals.

Reviewed and approved by the American Lung Association Scientific and Medical Editorial Review Panel.

Page last updated: November 17, 2022

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