ADEM Support Network
Barbara Kreisler

I spoke with a mother today whose 3-year-old son was diagnosed with ADEM. It was a relatively new diagnosis so there were lots of questions to answer.  During my conversations with parents and with adults with ADEM, one of the first things I do is to send them to the TMA web site: www.myelitis.org.  There is excellent information under the link ‘about ADEM.’  You can view streaming video of physician presentations from many of the TMA-Johns Hopkins Symposia.  These presentations describe ADEM, as well as symptom management strategies for the symptoms of ADEM.  I urge anyone with a personal involvement with ADEM to check out these incredible resources.  Knowledge is the power behind battling ADEM. 

You can also learn about how others have successfully adapted ADEM into their lives by reading the “in their own words” articles from newsletters and journals in the archives under the link ‘Newsletters.’  There is also excellent information for caregivers and family members.  You can learn about what’s happening in the medical community, such as the Accelerated Cure Project which will be a valuable tool for researchers who want to study ADEM.

I urge everyone to try their best to attend the symposium in Seattle, July 16 – 19.  It will give you an opportunity to meet folks who have ADEM and families who have learned, and who continue to learn, what it means when ADEM affects your life.  It is a wonderful opportunity to learn from neurologists and other health professionals about the neuroimmunologic disorders, how to manage symptoms and the most recent research.

We are currently working on a database of people with ADEM who are members of the TMA.  The database will serve to facilitate research and clinical trials and will foster networking opportunities.  For people who are interested, we will also be publishing a directory of ADEM members so that we can more easily find each other to share information and support.

It is one of my goals to raise public consciousness about Acute Disseminated Encephalomyelitis and to make a difference in the lives of individuals and families living with ADEM.  We’ve been slowly accumulating a wide range of stakeholders. There’s still much to be done.  We invite you to become a partner in our fight against ADEM. Your financial support is vital; please support The Transverse Myelitis Association.

Dr. Benjamin Greenberg has recently established the Johns Hopkins Encephalitis Center, and serves as its director.  Dr. Greenberg is an Assistant Professor of Neurology, Co-Director of the Johns Hopkins Transverse Myelitis Center and serves on the TMA Medical Advisory Board.  Please review the web site for information about the Center:

http://www.hopkinsneuro.org/encephalitis/index.cfm

As someone who has been dealing with ADEM for 1 ½ years, I know the importance of speaking to health professionals. What I also know is that it is incredibly rewarding for me when I speak with family members who have just confronted ADEM. I hope that in some small way, I have been of value to them.

I’ve coined us “ADEMights;” I think it is an appropriate name for those of us who have become stronger from our experience with ADEM!

Barbara Kreisler
(703)366-2861