Video Vignettes: Through Their Own Lens: Living with Sarcoidosis
“Imagine being in a crowd and wishing you were invisible, but you’re marked, and there is nowhere you can hide.”
Shanene Higgins wrote that in her essay “Marked: My scars remind me of my purpose,” part of Inspire’s 2017 Experts by Experience eBook. Higgins has sarcoidosis, an inflammatory disease that can cause rashes and sores on the skin. Part of Higgins’s experience was bullying:
“There were many times when people would stop and stare at me as if I was a fish in a fishbowl…One afternoon while walking…I saw three teenagers — a boy and two girls —walking down the street… As they came closer to me, the boy…yelled a profanity…turned around, and, while walking backwards, pointed at both of his cheeks and shouted disgusting profanities.
I felt like I had been punched right in the middle of my stomach, and my heart sank as the tears formed in my eyes. That was a bad incident, but only one of many I’ve experienced from being physically disfigured – I face rejection, and alienation, every day.”
Sick without warning
Sarcoidosis can appear suddenly in otherwise healthy individuals, as members on Stop Sarcoidosis, the Inspire/Foundation for Sarcoidosis Research support group and discussion community attest:
“I was diagnosed out of the blue with no real symptoms at all”
“I was not ’feeling’ sick at all when I was diagnosed. But then little things started happening. Dry eyes, fatigue, insomnia, little skin sores, nothing really big, just annoying.”
The exact cause of sarcoidosis is not known. What is known is that the body’s immune system has an overly active inflammatory reaction, where cells of the immune system collect into nodules or lumps called granulomas. These granulomas can appear anywhere in the body, but especially in the lymph nodes, lungs, eyes, heart, liver, brain and skin.
For over half of the people diagnosed with the disease, remission occurs in the first 3 years after diagnosis and almost 70 percent are in remission within 10 years of diagnosis. But one-third of people with sarcoidosis have progressive disease potentially causing permanent scarring of lungs, cataracts, glaucoma and blindness, kidney failure, heart problems, and nervous system involvement.
Our “Through Your Own Lens” initiative invited Inspire members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. A member of Stop Sarcoidosis, the Inspire/Foundation for Sarcoidosis Research support group and discussion community shared her feelings about living with sarcoidosis.
Online Communities Help Support and Connect
Inspire’s Stop Sarcoidosis Support Group has over 38,000 members globally with over 27,000 in the US. This active community is eager for research to find a cure for their condition. In fact, there have been over 1,000 query matches for “looking for clinical trials” in this community. Here are just a few:
“[D]oes anyone know of any promising clinical trials or treatments that are proven to be successful. [B]een struggling as of late and looking for more options.”
“I am interested in information about being a part of a study or clinical trial. I have lung sarcoidosis, skin, eye troubles etc. Any information is welcome.”
The Internet, social media, and online support communities are helping people with rare diseases find each other and also find researchers. Inspire has created 40 rare disease communities with non-profit partners. For more information or If you are interested in connecting with our rare communities, please contact us.
To read more of Shanene Higgins’ post and other patient stories, download Experts by Experience 2017.
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