Some more good news to share for people who are living with chronic conditions such as transverse myelitis (TM), a rare condition that strikes the central nervous system as seen as inflammation on an MRI which can be acute or subacute.
Thank God for innovators—or more specifically, the seven succulent doctors (yes succulent) who created www.emdocs.net.
Pardon me for sounding so sexual, I don’t mean to be! But, whenever I hear exciting news in the TM community, I savor every morsel—this community needs our help! We should all savor anything that helps build awareness, right?
As I understand it, these docs set out to provide additional medical resources for other doctors and healthcare professionals in this very cool and informative website initiative. And of course, what’s also really cool is that WE have access to it, too.
Their goal is to help educate emergency room doctors and nurses to keep them current. You with me?
But instead of presenting a bunch of boring statistics, gobbledygook and doctor mumbo-jumbo, they present the information as though they are on-the-job in the ER, encountering a newly-arrived patient, whose symptoms are later identified as those consistent with transverse myelitis.
Being a lover of stories, I think it’s a great way to capture the attention of busy healthcare professionals—and humanize the experience.
What they don’t do so well is capture what it’s like as a patient, what it’s like to suddenly or gradually lose the ability to walk or feed themselves.
One of the key learnings I made is that although inflammation may cover the entire width of the spinal cord, the resulting loss of nerve function in the legs, feet, hands, and/or arms is not necessarily bi-lateral.
Another thing I liked is they spelled out the specific diagnostic criteria. Very helpful for a rare disease that affects fewer than 34,000 Americans.
It’s called “Traversing Transverse Myelitis.” It rocks…for what it is. Oh how I wish Big Pharma could come up with a disease-modifying treatment—or something OTHER than steroids to treat its onset, something with tolerable side effects.