Weekly Warrior: Meet Kerry

“Hi everyone! Kerry AKA @buttahflyk here. I’m a happy hippie trying to do some good in the world, living with a bunch of chronic illnesses that only THINK they can stop me. That bunch includes #sarcoidosis, a few different types of #arthritis, a few different types of #neuropathy, and a handful of other conditions, just for extra fun (see all the hashtags below, and I’m sure I’ve forgotten a few ). It took 4 years for doctors to believe that anything was wrong with me, another 4 to diagnose it as sarcoidosis. Even today (6 years later), we’re still trying to figure out new symptoms, comorbidities, and treatment plans. That’s far too common among #Chronicillness patients, especially those with #RareDiseases and #InvisibleIllness. That’s why it’s so important to share our stories, so other people going through it will know that they are not alone, and to make the journey a little bit easier for the newly (or not yet) diagnosed.

Between the pain, fatigue, and unpredictability of all these diseases and their symptoms, I’ve become #disabled as a result. That said, I do all I can to support the chronic illness community through my website, column, social media, speaking engagements, and other awareness events. Over the years, I’ve participated in countless surveys about my conditions, all in the name of progress in research. What’s great about the Rare Patient Voice surveys, though, is not only that they are helpful for the future of medical products & services, not only that they will help improve the lives of patients. Through RPV, we get compensated for our time and experience, which reflects a level of respect that we don’t often receive.~“

If you are interested in being featured as a Weekly Warrior, please contact Stacey Haines at Stacey.Haines@rarepatientvoice.com.