Coming Together to Support Patients Living with Sarcoidosis

Rhonda Jenkins works to improve understanding of sarcoidosis.

(StatePoint) April is Sarcoidosis Awareness Month and to help bring light to this rare disease, the American Lung Association sat down with Rhonda Jenkins, program manager at the Respiratory Institute within Cleveland Clinic to discuss connecting patients with resources and the community with understanding.

What is sarcoidosis?

Sarcoidosis is an inflammatory disease in which the immune system overreacts, causing clusters of inflamed tissue called “granulomas” to form in different organs. It most commonly affects the lungs and lymph nodes, but can also affect the eyes, skin, heart and nervous system. Sarcoidosis is a rare lung disease, with fewer than 200,000 estimated cases in the U.S. Symptoms vary from person to person, and with good treatment and follow-up, may improve.

Q: What is your role at the clinic?

A: As program manager for Community Outreach for sarcoidosis, I lead several initiatives aimed at getting individuals the best care and support possible. I work directly with patients, learning from them which aspects of their care are challenging and if they’re lacking resources to achieve optimal wellness. For example, some people living with sarcoidosis are unable to work or do the exact job they had been doing. I assist with connecting them to work resources or point them toward support for applying for disability.

I also coordinate learning opportunities to share information about sarcoidosis symptoms, diagnosis and management with local churches, health centers and other community sites.

Q: What do you wish people knew about sarcoidosis?

A: Before I worked with people living with sarcoidosis, I supported patients recovering from traumatic injuries. I’ve noticed a difference in community understanding between a patient with an amputated limb and the patients I support now who live with chronic fatigue or pain. With sarcoidosis, the symptoms often aren’t visible and that can make understanding, which is needed for empathy, more difficult to come by.

I would ask that others not judge folks who have symptoms that seem vague or unusual. Patients sometimes express that when asked about symptoms or challenges, well-meaning family, friends or co-workers can get so caught up in understanding the disease they forget to focus on helpful action. It’s great to want to learn more but even better to follow up with the “how can I help?” so readily offered those with well-known conditions.

Q: What advice do you have for patients?

A: Never give up! You know your body best and know if something isn’t right. Continue to seek answers, second opinions if needed, and be your own advocate. If you’re on a medication and don’t feel it’s working, talk to your doctor about other options. Or if you’re given directions to get labs regularly and you don’t understand where the lab is, how often to go, what the tests are for, or a host of other questions, ask to speak with someone who has a job like mine to help navigate the health system and get the care you need. It’s important to have someone in your corner.  

Q: What words of encouragement do you have for patients?

A: We have a team of amazing doctors specifically dedicated to finding and helping patients living with sarcoidosis achieve their optimal health. National organizations like the American Lung Association and Foundation for Sarcoidosis Research are working together to support patients now, and in the future with better treatments and ways to diagnose this disease earlier.

To learn more, visit Lung.org/sarcoidosis or Stopsarcoidosis.org. The American Lung Association and Foundation for Sarcoidosis Research work collaboratively to connect with patients, clinics, providers and the general public to raise awareness of sarcoidosis and support individuals living with this disease. Support for this partnership was provided by an unrestricted educational grant from Mallinckrodt Pharmaceuticals.

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