ADEM, NMO, ON, Recurrent TM, TM with Lupus, Sarcoidosis, Sjogren’s and HIV: Finding Each Other to Share Information and Offer Support

The Transverse Myelitis Association helps to create networks of people from around the world to share information and to provide support.  Jim is busy creating new ways to accomplish that task every day of the week.  From the Transverse Myelitis Internet Club to bulletin boards to support groups, we are constantly seeking new vehicles for facilitating these communications between our members.

The vast majority of the members listed in our directory have Transverse Myelitis.  It is so important that people with the even rarer neuroimmunologic disorders have an opportunity to find each other; and they are unable to do so just by using the directory.  About two years ago, I began compiling lists of people with these other disorders.  When a person signs up for membership in the TMA using the electronic form, and they identify that they have a disorder other than TM, I have asked them to consider being added to the list.  I only share these lists with people who are willing to be added to the lists.  I currently have lists compiled for:

1. Acute Disseminated Encephalomyelitis (ADEM);
2. Neuromyelitis Optica (NMO) or Devics disease;
3. Recurrent Transverse Myelitis;
4. Transverse Myelitis with SLE (Lupus).

I would like to create the following lists:

5. Transverse Myelitis with Sarcoidosis;
6. Transverse Myelitis with Sjogren Syndrome;
7. Transverse Myelitis or NMO with HIV; and
8. Optic Neuritis.

If you are interested in being added to one of these lists and then periodically receiving a copy of the list, you can send me your contact information either by email or through the postal service.  Please send me your full name, complete postal address, phone number and email address (if you have one).  Be sure you clearly identify to which list you would like to be added.

Sandy Siegel
1787 Sutter Parkway
Powell OH 43065-8806
USA