Thanks to my buddy Bryan, today I had the opportunity to return to Robert Wood Johnson Medical School at Rutgers University. I was invited back to speak about my diagnosis, inpatient/outpatient experiences and explained the disadvantages and disabilities after HLH treatment and living with Stills Disease. Amanda was able to explain more of the medical aspects of things from when I was sedated.
I was able to teach them some of the long term effects of the diseases and medications that affect my joints, organs and mobility on a daily basis. Some of these occurred because it took a long time to get a diagnosis and start treatment. Stills Disease is often referred to as an invisible illness because on the outside I look quite healthy, but on the inside my body is still attacking itself every day for the past 7.5 years. There is no cure and I have been unable to get to full remission with current available medications.
The students also learned how difficult it can be for patients like me to maintain a full time job while navigating the healthcare system, insurance company, seeing specialists, getting labs, testing and pre-certs just for a few meds to keep me alive. We were able to let them know about my plan to participate in legislative initiatives to reduce pre-authorization times and eliminate the archaic step-therapy protocols.
It was great to see how open the students were to learning about a disability like mine that isn't so visible.
Eric was diagnosed with HLH & Still's Disease at 27 years old in 2012 and given only a 5% chance to live. This is his journey.
Connect with Eric