My First Rare Neuroimmune Disorders Symposium

By Julie Barry

My name is Julie Barry. On September 13th, 2008, I was diagnosed with Transverse Myelitis. I remember the day I got home from the hospital. I went online and started to look up my rare condition. One of the first things I came across on the internet was The Siegel Rare Neuroimmune Association. It explained everything in detail. It gave me names of people I could talk to about this condition. The very first person I talked to was Deborah Capen. She told me her story and convinced me to register with SRNA. I did. It wasn’t long after that Sandy Seigel called to let me know about a woman who would be calling me. She was starting a support group in Tucson, and that is when I met my dear friend Barbara Sattler. Barbara has been with me from the beginning of my journey. Barbara has always tried to get me to go to the SRNA Family Camp and symposiums. I am not sure why it took me so long to listen to her.

This was the first year I went to the Rare Neuroimmune Disorders Symposium. I was so surprised by the doctors. They were not arrogant like so many doctors I’ve encountered. Dr. Pardo, Dr. Greenberg, and Dr. Kerr were the doctors I’d heard so much about. I call them my dream team. They are trying to carry out my dream, which is to reverse the effects of Transverse Myelitis. I like that they didn’t mind me asking them questions, and they even answered them. I learned that my dream team of doctors is much bigger than I knew.

I learned so many things, like that there is Vascular Myelopathy, a stroke in the spinal cord, though my condition is an Inflammatory Myelopathy. I was surprised to find out that 50% of people with TM are misdiagnosed. I didn’t know that the spinal cord controls things like the skin, brain, and even your bladder. I also learned things like the myelin sheath around our nerves does not only insulate the nerves, it feeds them. I learned about both Vitamin D3 and B12 and how important they are for us. Also, I need some physical therapy (PT) for all the parts of my body that give me trouble, like my spastic muscles. I learned I need Cognitive Behavioral Therapy because I cannot get that old me out of my head. I need to go see a urologist. Oh and of course as Dr. Greenberg said PT, PT and more PT.

I met so many people just like me. People who were still going through the struggles I went through in the beginning. I met people who have had this condition far longer than I expected. One women was diagnosed in 1969.  I had no idea that it has been around that long.  I met people who were having struggles that I never had to deal with, like children who are angry because this disease happened to their parent. How hard that has to be. I am not a parent but I can only imagine that you would want to protect your child from anything that would harm them both physically and emotionally. How do you do that when it is you that is causing the hurt? I met many amazing people. I met two sisters, who I had read about; little did I know that we were meant to meet. We are neighbors. One sister lives so close to me. Coincidentally, we flew home on the same flight together and brainstormed on how to help raise awareness and money for my dream to reverse the effects and find a cure for this condition.

Last but not least, I met a woman who is struggling not only because of her life and how it turned out, but because her support system isn’t always there. She may not have realized how special she is. I watched as she held the hand of a little boy who seemed to be in awe of her, perhaps it was because she too was in a wheelchair just like him or maybe he felt the love she has for people. It was a very special thing for me to see.

So, as you can see there was so much I learned, not only medical education, but emotional education. I do have some regrets. I wish I had listened to my friend Barbara and gone sooner. I hope to get to the camp next! Thanks so much to all the Board members and Staff of SRNA who put on this event and for helping make it affordable for members. Thank you for all that you do for us.

Videos from the 2017 Rare Neuroimmune Disorders Symposium will be available in our Resource Library and on our YouTube Channel.