The very first search I did after we got a computer and Internet service was “Transverse Myelitis.” I had “met” TM a year or two before and tried to research it, but all I could find in our local library was a two-page spread in a medical book. I was thrilled to discover the Transverse Myelitis Internet Club, a subscriber list where everyone who subscribes gets the e-mail everyone else sends to the list. What a relief it was to have someone to ask questions of and compare notes with, people who understood what I was feeling and what I meant when describing certain symptoms! I’ve made a great any friends there and even met a couple of them in person. It has been a wonderful support system for me and for many.
From there I found a few other sites and sources and articles that I thought I would highlight here. Click on the bolded words to go to the sites. Note: a listing here does not imply complete endorsement of everything on the site.
The Transverse Myelitis Internet Club: the e-mail subscriber list of TM patients and caregivers is no longer active, but archived searchable posts are at this location.
Transverse Myelitis Folks, a Facebook group for those with TM and their families and caregivers.
The Transverse Myelitis Association: (renamed the Siegel Rare Neuroimmune Association or SRNA), the only one of its kind. Membership and the online information and resources are free. Past newsletters are available in PDF format here. “Transverse Myelitis: Symptoms, Causes, and Diagnosis.” has been renamed “What Is TM?” with options to click in the sidebar.
Jim Lubin, one of my heroes, began and maintains many of the sites listed above and many others as well.
iGive.com: shop online through iGive an a portion of the sale goes to the charity of your choice. If you do not currently support a charity, may I suggest the Transverse Myelitis Association.
Though many of these sites advocate stem cell research as a cure for TM, I cannot support the use of embryonic stem cells because I believe life begins at conception. Jim Lubin has articulated well my feelings on this in a stem cells discussion on the TMIC and perhaps his words carry a bit more weight because he is more severely affected, paralyzed from the neck down and ventilator-dependent. Though we come from different theological viewpoints, our views are the same on this issue. Two parts of his comments are here and here. I have heard many good things about the use of adult stem cells and stem cells from the blood in umbilical cords, and I would fully advocate stem cell usage from those sources.