My quick journey from advocate to hospital patient
Last updated: December 2023
As a RRMS 47 year old I have years of experience with Multiple Sclerosis. I also have the same with advocacy and activism. Last Wednesday I had the honor of attending the Genzyme and FDA hearing for Lemtrada. I was asked to be an open public speaker and share my story.
The FDA did not seem ready to approve Lemtrada for a few reasons, one being the serious potential side effects.
My practiced words failed due to vertigo, blurred vision and other MS symptoms. I did however manage to say that I had failed all drugs and had a 7 year downward spiral with unmanageable cognitive and physical symptoms. I left feeling defeated and really bad. The next morning my left side began to feel weird. 3 days later my side was almost completely paralyzed. I spent 4 days in the hospital receiving a solumedrol IV.
As I tried to wrap my brain around the past week I found out that Lemtrada had been approved.
So, I did make a difference. I paid a price, but it was so worth it. I don't want my legacy to be "Oh she had MS". I want and will make it "she fought for MS, for her and every person with this unpredictable and devastating disease." I will make a difference, even if it's just a small one.
As for Lemtrada, I'm not sure yet.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: