Empowered Patient Podcast Advocating for Patients with Multiple Sclerosis with Trisha Bordelon PatientsLikeMe
Trisha Bordelon is a patient advocate and active participant with the PatientsLikeMe organization. Trisha talks about her journey from when the doctors first diagnosed multiple sclerosis through her attempts to find an effective medication. Along the way, she discovered some genetic and environmental factors in developing this disease. She also found a community of patients and advocates on PatientsLikeMe, where she found guidance and where she shares resources and advocacy support.
Trisha explains, "I found PatientsLikeMe just by surfing the internet, and I didn't want somebody else to go through what I went through when I was first diagnosed. My doctor, when I was diagnosed with MS, handed me two brochures. One was for Copaxone, and the other one was for, I believe, Avonex. And he said, "Take these home, take a look at them, come back next week, and we'll decide which medicine you're going to start on." I didn't know anything about MS, in my mind's eye, since I had a relative that had it, I'm thinking, "Oh my gosh, I'm going to end up in a wheelchair within six months. I won't be to work anymore. My life as I know it is over." I want to spare somebody else going through that agony."
"I stayed off work from 2017 to 2021 and then went back to work full-time for one of the hospitals. They were so short-staffed and could not get enough people that they were reaching out to people that might have a disability or might have a problem. I did not try to hide my MS from them, but I also didn't volunteer it. I put down that I had been formally on disability, and I told my boss that I did have some limitations, but no one ever asked, so I did not disclose them."
@PatientsLikeMe #MultipleSclerosis #MS #ChronicKidneyDisease #PatientAdvocacy #ChronicIllness