It’s time… time to sign up for SRNA family camp at the Center For Courageous Kids! When I received the email today, I asked my 11-year-old daughter, Ireland, if she wanted to go to camp this year. She looked at me in total disbelief for asking…”Of course!!!” she said.
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Like a family reunion, those of us who have suffered the effects of Transverse Myelitis along with our supporters and physicians involved in treatment and research, gathered at the University of Texas Southwestern Medical Center for this year‘s symposium.
A research paper was recently published from the Northern UK NMO Service by Drs. Kerry Mutch, Abigail Methley, Phil Moore and Anu Jacob to develop an improved understanding of the experiences of people living with NMO. 15 patients from the Northern UK NMO Service were interviewed and five major themes were identified – diagnosis and treatment, symptoms, adjustment, identity and support.
The SoCal TM support group got together on August 24, 2013 at the Dayle McIntosh Center in Garden Grove, CA. The Dayle McIntosh Center was gracious to let us use a large conference room for our meetings.
Fifteen people attended the meeting, 13 of whom were diagnosed with TM. One person drove from Bakersfield, at least a 150-mile drive, to join us. Another drove 70 miles from Encinitas.
In April, a committee of five people from Michigan connected by phone to discuss possibilities for a Walk-Run-N-Roll event.
On October 5, over two hundred participants merged from across the state on the campus of Harderwyk Ministries for a Saturday morning like none had experienced before.
One of the most frequent requests we receive at SRNA is a referral to a specialist who understands TM, ADEM, NMO or ON. Finding these specialists is critical and also a challenge. It is a challenge because these disorders are rare and there are few centers and physicians who focus their specializations on these disorders.
I was so pleased that my out-of-the-blue call to Sandy in March 2013 paid off. As member of SRNA, I receive the quarterly newsletters and opened up the Jan. 2013 edition to see a picture of participants from the 2012 SRNA Family camp. In addition to having TM since 1972, I work for U.S. Paralympics (www.usparalympics.org), a division of the United States Olympic Committee, and I knew our organization needed to reach all those attending the camp.
Most young girls spend their time riding their bikes, playing soccer, doing cartwheels, and other fun activities. Sarah Todd Hammer from Georgia and Jennifer Starzec from Illinois were no different. That is, until they both became paralyzed from the neck-down from an autoimmune condition called Transverse Myelitis (TM).
Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM).
Without making it a sob story, I wanted to share a bit of my history. A lot of people have illnesses or things happen to them where the only choices are to succumb to it or to work hard in order to have a life as well as you can get. The Paralympics events have shown us that people are consistently overcoming disabilities or illnesses to be successful in different areas of life.