10.2.17 Mind = Blown

According to this article from the Department of Health and Human Services,

“The Food and Drug Administration today announced the approval of riluzole, the first drug that has been shown to prolong the survival of patients with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.”

This article is dated December 12, 1995.

Lou Gehrig stood on the mound at Yankee Stadium and told the world he considered himself the “Luckiest Man on the face of true Earth” on May 2, 1939 when he benched himself because of ALS. 56.5 years later, the FDA approved the first drug in the fight against ALS with the prolonged survival on average of about 3 months. Yes, you read that correctly: prolongs survival on average of about 3 months. I don’t know about y’all, but I want more survival than 3 months.

Cue May 5, 2017 when the FDA approved the second drug in history in the fight against ALS called Radicava. I have shared with you different times about the power and promise this drug has for my future and the future of everyone else who is living with this disease.

So, why the history lesson? Well, I’ll tell ya: tomorrow, October 3, 2017 I, Sunny Brous Erasmus, am receiving the drug Radicava by mail to begin treatment as soon as we get the home health nursing schedule figured out. The plan is to get the initial 14 consecutive days intravenously then, hopefully, during the following 14 day drug free period I’ll get scheduled with a surgeon for a port. The next round is 10 administrations in a 14 day period, followed by another 14 day drug free period. The port would allow me to receive the medication without having to get stuck every day or every couple of days.


3 thoughts on “10.2.17 Mind = Blown

  1. I will get my port a week from tomorrow and hope to hear about when I can start today. wishing you success with Radicava. It gives us so much hope! Hugs!💜


  2. We are still waiting to hear from United Health Care. They initially told Tom he did not meet the criteria. Dr. had a peer to peer with insurance on Friday and they told her the denial decision had been reversed. So happy for you and hope we get the same news you did.


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