The Twitter Rx: Social Networks Get Personal

My mother is running out of Cylert, a drug manufactured by Abbott Laboratories until it was removed from the market by the FDA in October, 2005. Cylert, whose generic version is pemoline, was mainly prescribed for kids with attention deficit hyperactivity disorder, but for some reason it dramatically helps Mom function in spite of her MS. We have hunted all over the world for pemoline, and she is now trying to get a lab in Japan to make the drug privately for her. Her supply will run out before the end of the year. This is not a precisely life-threatening problem, but Mom’s life without Cylert is very tough, and dark. None of the alternatives she has tried have given anywhere near the benefit of Cylert/pemoline. I’m trying to find her some.

I put up a Tweet about this on Twitter four hours ago, and the result has been pretty amazing. I heard from a Twitterer whose mother works in a nursing home and suggested an alternative (Mom’s looking into it.) Another called his local pharmacy in NYC to see if by chance they had any of the drug. Podcamp impresario Christopher Penn got hold of an Abbott directory and sent emails to employees, apparently, because I heard from one who e-mailed me a link to a pemoline site we didn’t know about. She’s also emailing manufacturers and making calls to see if she can help.

I’ve kept Mom in the loop this morning, calling her in Cambridge with the latest developments. She joked that if Twitter results in finding more of this crucial medication, she will get a tattoo with the Twitter logo on it. Probably on the bottom of her foot, probably temporary. But still.

When I saw the first Tweet that relayed my plea to a broader audience, I got pretty choked up. Justin Kownacki followed up with a blog entry, and CC Chapman chimed in with a Tweet with the link to Justin’s entry. And thus it spread, with help from Twitterers WickedGood, Connie Reece, roland tanglao, Joe Cascio, Annie Boccio, Ellen Moore, Eric Skiff, and Steph Stockman, among others.

Social Media is a big idea that I love to talk about and argue for. This is the first time I’ve had it touch me so personally, and I’m blown away by it.

I’m following every lead, checking the Tweets and emails as if I’m following a breaking news story. It truly is a big story for our family. My mother has battled MS for 40 plus years, with bee stings, grit, humor, fierce will, and every treatment known to the best doctors in Boston. She is unsinkable, an author, an artist, the prime mover in the lives of four generations in our family. When I see how devastated she is at the prospect of running out of this medication, well, I don’t even want to go there. I hope the flurry of activity this morning brings more than a warm vibe. I hope it brings her the a new supply of the medication.

Note: the FDA ban had to do with liver problems in children. Mom is 78, and her doctor is not worried about potential liver trouble. If some of the medication is found, it cannot be sold legally, so it will be a matter of a donation of some kind, getting something of no commercial value into the hands of someone who needs it very much.

Just as I’m wrapping this up, I hear from devBear in southern Florida, who Tweets “i have put out feelers for the drugs in Singapore / Malaysia and possible Australia.”

I guarantee you that if we find this stuff, I’ll have a photo here of Mom’s new tattoo (or at least a tasteful pin with the Twitter logo).

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3 Responses to The Twitter Rx: Social Networks Get Personal

  1. Justin Kownacki says:

    Glad to hear you’re getting some feedback on the issue — hoping the feedback becomes increasingly productive.

    Perhaps this social media swell should be brought to the attention of the mainstream, in an effort to bring attention to the “one-size-fits-all” solutions for medical issues (and how wrong they are)…

  2. Roland says:

    thanks, i wish i could have actually helped, next time i hope i can actually do something

  3. scythian says:

    If you can find some cylert/pemoline please let me know. I have narcolepsy/nocturnal myclonus and took it for 23 years. Nothing else works and my life is going down the tubes because all I do is sleep. I’ve been searching the internet since the FDA banned the drug.

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