There is an interesting article that I think the transverse myelitis (TM) Community needs to read, posted on Mobility Management.
It was a real eye-opener for me – it brings to light the potential workforce ramifications after diagnosis.
While I’m beyond just getting my feet wet in understanding this disease, I haven’t actually ever met anyone or read a first-hand account—until NOW—of what it’s like to live with this rare disease, so I want to share some of the highlights…
I’ve written a previous article on TM, discussing the known symptoms about this rare and very serious condition, but I’m just getting started in my efforts to help build a stronger community of hope, inspiration, wellness, and education—all of which I think are crucially important because this disease is sooooooo rare.
People who have been diagnosed with transverse myelitis aren’t getting the support they need from the pharmaceutical and biotech companies that develop treatments and support services.
Why? Hmm… one would think that there are no FDA-approved treatments to prevent or slow the progression of this condition because they can’t make enough return (money) on their investment of one billion dollars to bring the drug to market.
What I found really interesting about this article is that it’s not unusual for someone who’s been diagnosed with TM to require assistive devices such as canes and wheelchairs, etc.
And the article sets out to help educate workforce professionals on how to meet and accommodate their needs on the job. And there’s a really inspirational segment about the president of the TM Association, which you can visit here.
The subject is very personal to him because his wife was diagnosed with TM years ago, and I overwhelmingly applaud his efforts to build community for the mysterious condition.