Life with sarcoidosis can be hard and no one knows that better than our patients. Doctors and other medical professionals can answer some questions, which is why we host Q&A sessions. However, there are questions that doctors can’t answer, about experiences they can’t fully understand. This is why we reached out to you, our patients, for advice.
We know that the fight against sarcoidosis can sometimes feel overwhelming, but we want you to know that you are not alone in your experiences. Over the last couple months you gave us advice on hard conversations with friends and family, how to navigate financial concerns that come with sarc, improving quality of life, and how to make the medical system work better for you. We hope that all of this advice, when passed on to other sarc warriors, will help make someone feel less alone in their fight.
Keep checking in throughout the coming months for the more advice from your fellow sarc warriors!
Making Our Medical System Work for You
How could your doctors be more supportive of you?
Sarcoidosis patients face a variety of issues that can make diagnosis and treatment more complicated than it is with other diseases. When we asked patients how their doctors could be more supportive of them, their main concern was how little their doctors talk to each other. Since many sarcoidosis patients have complications involving many organs, they may need multiple specialists. Patients described frustrating situations in which their doctors refused to communicate with each other putting more work on the patient.
“Many of us have sarcoidosis in multiple organs. Stitching together comprehensive care across multiple specialists can be daunting. Add in a non-related condition or two, and it’s impossible. I’d like doctors to be more proactive in working with each other. Some days I just don’t have the strength to do it for myself.”
– Mary Y.
FSR has been working with our partners at the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) to identify clinics who are providing outstanding, comprehensive care for sarcoidosis patients across the globe. Over 70 clinics worldwide have been designated as a “sarcoidosis clinic.” This is the first round of a three-step process to identify the top care centers worldwide.
The other main concern from patients was lack of disease awareness from physicians. Since sarcoidosis is a rare disease many doctors know little about it. Patients expressed how important it is for doctors to educate themselves about this disease. This way the patient doesn’t feel like they are their own doctor.
“They need to educate themselves about the disease! I shouldn’t go to a doctor that claims to be knowledgeable/an expert and have them say “you probably know more about the disease than me.”
– Claire C.
“If a physician doesn’t know about sarcoidosis, they need to be ethical and refer the patient to a specialist. Otherwise, they need to educate themselves quickly, and consult a specialist. This will prevent them from ordering useless tests, and then telling the patient there is nothing wrong.”
– Mary K.
What advice do you have for newly diagnosed patients?
“Be persistent. You will need to self-advocate and not feel bad about it. Also, self-care is important for everyone but in our case it’s especially important. Be aware of how you feel and listen to your body. If you need a break, take it.”
– Ashley P.
“Make sure you find a specialist. Your general practitioner may not be as familiar with sarcoidosis as you need them to be. Also, make sure all your doctors share your files and are aware of your condition.”
– Don B.
“Just because you’re sick doesn’t mean you can’t be as healthy as you can be. A healthy diet and regular exercise, in whatever way you are able, will help you better manage your symptoms.”
– Lisa C.
What is the biggest problem you’ve encounter with medical professionals?
“Across the board a lack of knowledge on the disease or misinformation.”
– Don B.
Many sarcoidosis patients expressed this same sentiment. In order to combat this lack of physician knowledge, FSR has a few helpful resources. If your doctor doesn’t know how to treat sarcoidosis, give them our Treatment Protocol. This document, created by our Scientific Advisory Board, details the various manifestations of sarcoidosis by organ. It also explains the different treatment options that are available, including off-label therapies. If you are unhappy with your current doctor and would like to find someone new, you can use our Physician Finder. This is a directory of doctors who have indicated to us that they are interested in treating sarcoidosis patients. Last, if you are looking for more resources to show your doctor, you can direct them to our educational resources. This page has pamphlets on sarcoidosis, recordings of our patient conferences, and much more!