Posted on 05/06/2017 4:34:07 PM PDT by Extremely Extreme Extremist
PHILADELPHIA (CNN) — The US Food and Drug Administration has approved the first new drug for the treatment of amyotrophic lateral sclerosis, or ALS, in more than two decades.
The FDA announced Friday that Radicava, also known as edaravone, has been approved for use in the United States. The only other drug specifically for the treatment of ALS is riluzole, which was approved for use in the United States in 1995.
Tests conducted in Japan found that ALS sufferers who received edaravone experienced a smaller decline in their level of daily functioning compared to those who received a placebo.
(Excerpt) Read more at philadelphia.cbslocal.com ...
I was saddened to learn a couple of weeks ago that a beautiful young woman I worked with in 1993 recently died of ALS.
She was unusually pretty and a great athlete. She died only a little over a year after her first symptoms. She was in her early 40s.
Niacidamide is available and effective with no side effects
I’ve known 2 people close to me to die of this. Horrific disease.
My Mother dies in 2008 of ALS. She went from somewhat walking to dead in 5 months.
dies = died
My cousin, forty, who looked like a Greek god, died 18 months after diagnosis. He was unusually strong. It didn’t help a bit.
About a year before he was diagnosed, I was talking to him on the phone and he slurred a few words. I asked if he was drinking. No, he’d given up alcohol because lately its effects seemed magnified. But he’d heard the slur and was worried by it. He went to see his doctor and was told not to be concerned.
He told me when he was diagnosed that the diagnosis was arrived at by eliminating all the other possible diagnoses. The ALS doctor told him, “Look, there’s no test, but believe me, I’ve seen hundreds of patients and you have ALS.”
Around the same time I lost an uncle to the same disease, but he was in his early 90’s.
this drug wouldn't be of much help to her...
I had not seen this girl since 1993 yet it really saddened me. I think the fact that she was such a healthy, beautiful young girl in my memory was part of it.
One of the very few girls I have seen who looked like she could really play with the men’s teams.
A few years ago, I observed a research grant review session. As part of the grant review process, people who were affected by the diseases that the grants addressed were invited to come tell their stories. There was a mother of an autistic boy; there was a letter from the daughter of a man with Gulf War Syndrome. But the story that hit me straight to the heart was the man with ALS. He was about 7 years out from his diagnosis, and was wheelchair bound and could not talk well at all. While he gave his (prerecorded) presentation about the disease, he kept saying over and over that he had a gift. Most people die within 5 years of diagnosis, but he had the gift of time. He was using it to promote ALS research. I think the thing that hit me hardest about him was that before he got sick, he was a research chemist—he worked in the same profession as I.
I hope to see the day when ALS is understood well enough for researchers to be able to rationally develop therapeutics for it.
There are only about 15,000 people in this country with ALS, aka Charcot’s disease, but they’re spread evenly through the population and the disease seems to strike at random. A colleague of mine who was in my Sunday school classes from kindergarten through confirmation died of it, and the son of a newsletter editor that I once worked with was a victim.
I worked with a former Marine F-4 pilot back in the early 1990’s. He was diagnosed with ALS. He didn’t know what it was, so after researching it further he became very depressed about his prognosis and the ultimate outcome.
He told me he did not want to end up being an invalid and helpless. At one point he nearly took his own life in an attempt to spare himself and his family from the inevitable stress and suffering.
Fast forward about 18 months after his diagnosis. He was in good shape. He went back to specialist, who told him he did NOT have ALS. Turned out his original work up was erroneous and he had been given a faulty diagnosis.
Another ALS sufferer I knew had ALS for about 10 years, on breathing and feeding tubes. He finally got to where he could only blink one eye lash and finally wanted the family to pull the plug. I don’t blame him, but the family dealt with his situation for over 10 years.
I’ll pass this on to my buddy whom just texted me on Friday that his Sister had just been diagnosed with ALS.
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