Frank Rivera

Last updated: October 2022

Rare Disease Health Leader Frank RiveraI am Frank Rivera, a rare disease patient advocate, an Illumina Ambassador, A RDLA Patient Advisory Council Member, a pharmaceutical advisory member and ambassador, a speaker for the rare disease community as well as a patient of Sarcoidosis. I also have Sjogren's Syndrome, IBS, MS, and Parkinson's.

In 2011, I was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer in 2004 and being treated with four years of chemotherapy and radiation for a disease I never had.

Due to that, I started a nonprofit organization called Sarcoidosis of Long Island in 2012. I didn't want anyone to have to go through what I did to get diagnosed and also to make sure Sarcoidosis patients know YOU ARE NOT ALONE!

Unfortunately due to my diseases, I have been through 9 surgeries, the worst one in 2014, in which I had a hole in my colon and sepsis. In the middle of the surgery, they told my wife to call my family and that I had about a 33% percent chance to make it through the surgery. Four days later I woke up with a smile on my face.

I have been a local, state, and federal government advocate for Sarcoidosis, an advocate for Diversity, Equity and Inclusion for clinical trials, and has been an advocate for Mental Health for Rare Disease, with an emphasis on Male Mental Health.

Mental Health has been a focus of mine because in 2015, I was told there wasn't any other medication for me. I was in pain, with no sign of a cause or a cure for Sarcoidosis. With that being my options I started to think of my options and didn't see much at the time. I put myself in a 72 hour watch, also known as a suicide watch. Knowing how strong I am, it made me worry about others in the rare disease community and their Mental Health. I decided to speak my truth about Mental Health to let others know it is okay to ask for help, both mentally and physically. I always say you are strong, not weak, if you ask for help.

I am just one of 30 million rare disease patients with a story. My goal is to make sure that I get mine and others stories out so they can be heard and so they know They Are Not Alone.

Click here to read all of Frank's articles on RareDisease.net.

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