Chasta Posey is a FSR (Foundation for Sarcoidosis Research) Patient Advocate, Patient Navigator, Member of the FSR Women of
Color Advisory Committee, and FSR Global Sarcoidosis Alliance Volunteer Leader
“Who knew, being between the ages of 19-20, that walking up a flight of stairs would be so difficult. Sarcoidosis took a turn, when it began to affect my lungs. I thought we were in a good place & had a handle on this debilitating illness, when one day I woke up, trying to catch my breath. I thought that it was a side effect from being exhausted with school & work. But to my surprise, Sarcoidosis decided to take a journey to my lungs.
I decided to call my doctor, explaining what I had experienced & he immediately referred me to a pulmonologist. This particular doctor ordered chest x rays to be done before I was seen in the office. Once the results were in & I saw the doctor, he immediately began to question me about drug abuse. He insinuated that I was an avid smoker & that was the cause of my shortness of breath. He stated that it was common for my community of people. I immediately went into defense mode. I spoke with my (diagnosing) doctor & he told me to never go back to him. The pulmonologist never read the doctor’s notes or even bothered to read through my chart. I felt extremely insulted & disrespected, to be profiled in a negative way.
A new appointment was made with a new pulmonologist & the doctor was well versed in Sarcoidosis. The chest x-ray confirmed that I was indeed experiencing Pulmonary Sarcoidosis. Being a student athlete, you understand why the usage of your lungs are important. But when that ability is taken away, you begin to put in perspective how important it really is. If my oxygen usage wasn’t a part of my everyday life, I wouldn’t be able to do half of the things that I do on a daily basis.
There were several challenges I faced, to get approved for oxygen. Being Excessively questioned about being a drug abuser, halted the approval of oxygen. Being young & active, made doctors question if it really was Sarcoidosis & ask more questions about being misdiagnosed. Being honest in this situation, didn’t really get me anywhere. My next step was to get my legislators involved, to speak on my behalf. It’s important to have your city/state representatives, to know what’s happening, so they can help you advocate & bring awareness to this illness.”
Story provided by the American Lung Association