patient stories

Coming Out of the Closet

By: Tiffany Simms, Bonnie Feldman, and Ellen M Martin

Autoimmunity has spent a long time in the shadows. It has a history of being under-served, under-recognized, and under-funded.  However, things are looking up. Just this past year, we’ve had hope from complementary medicine coming to the forefront and personalized nutrition getting easier. While these improvements did not explicitly mention autoimmune disease, recent media publications are catalyzing a change from under-recognized to recognized and bringing glimmers of hope for the Lonely Voices of Autoimmune Disease. 


Here are a few spotlights we’ve found:

Igniting Curiosity in the Public
December 17, 2015, CNN published the “9 Health Questions People Asked Google in 2015.” Surprisingly, one of the questions asked was, “What is Lupus?,” which is one of the most common diseases in young adults.

Soon after, on December 18, 2015, CNN published a story about a 24 year old who lived for 23 years with an autoimmune disease. Young Sarah Hughes, received an experimental stem cell treatment for her systemic juvenile idiopathic arthritis that she was diagnosed at 11 months. Her aunt, her mother’s twin, also had an autoimmune disease. Suffering from juvenile arthritis, Sarah’s aunt passed away at 37 years old.

Update: As the new year kicked off, we were faced with the death of Eagles gutarist Glenn Frey and the announcement of Sopranos actress Jamie Lynn-Sigler.

The Rock and Roll Hall of Fame inductee, Glenn Frey, died from complications of Rheumatoid Arthritis, acute Ulcerative Colitis, and Pneumonia. Not long after Lynn-Sigler announced that she had been living with Multiple Sclerosis for the last 15 years and opened up about her struggles while filming the Sopranos.

The new year began with high profile spotlighting of autoimmunity, will 2016 be the year for autoimmunity to come out of the shadows?

Screen Shot 2017-08-02 at 1.18.58 PM

 

Catalyzing Action in Research
While there are few reliable estimates of the total economic burden of the autoimmune disease in the U.S., a recent market research finding pointed to a large opportunity ahead. It predicted that the diagnostics market for autoimmune disease will cross $6 Billion in 2020. A huge number, but a testament to the huge need shown by our autoimmunity voices and a coming hopeful change.

“It took 7 years and more than 13 doctors to get them to even TEST for my autoimmunity.”

Update April 2016
Stephen Katz, MD, PhD, director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH presented a keynote speech at the Interdisciplinary Autoimmune Summit and called for a collaborative, multidisciplinary perspective. Research initiatives will include environmental causes and responses to therapy and mobile health devices.

With Sean Parker focused on finding the immunological underpinnings of autoimmune disease, his $10 million donation to research brings us one step closer to an autoimmunity center like Dr.Yehuda Shoenfeld’s.

Will autoimmunity continue on this mainstream trend? Only time will tell, but it is a bandwagon we will hop on. After all, the demand for proven personalized remedies is here! People are waking up and realizing how many millions, young and old, are facing this silent plague. The time to act is now. Let’s give autoimmunity the attention it deserves.

“One of the exciting things about the field right now is the commonalities of mechanisms that exists among multiple autoimmune disease.” Jeffrey Bluestone, UCSF


 

Be ready to supply what the Lonely Voices need!

  • Are you interested or already working on data and digital tools around chronic disease, come talk to us about being included in our SXSW 2016 Interactive Session – Hacking for Healing, and satisfying the demand.
  • If you’re part of a care delivery system, come talk to us about building an autoimmunity center.
  • Patients! Send us your stories, we believe your voices have power.

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