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My quick journey from advocate to hospital patient

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Christie Germans
    6 years ago

    Cheers to you for making a difference!

  • Lexine Darden
    6 years ago

    Thank your for your bravery Carrieb. Feel no defeat. You certainly have made a difference.

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