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Fight rare neuro-immune disorders. Together.
I was struck down with Transverse Myelitis on November 25th, 1994, at the age of 15. It was a Friday afternoon; I had just come back from high school, which I had started only a few weeks earlier. I had eaten my lunch and laid down to read a book for my upcoming book report. Suddenly, I felt a sharp pain in my shoulder blades, accompanied with a tingling sensation that was spreading down my body. Along with that, I was starting to feel that I was losing both sensation and the ability to move my legs. In a total of less than one hour, I became completely paralyzed from the neck down. Luckily, my mother and sister were at home and called an ambulance which took me to the nearest hospital. I was immediately taken to the ICU and started to undergo tests and examinations. It took around 10 days for the doctors to understand what I was suffering from, but finally I was diagnosed with Transverse Myelitis at C4-C5, which left me a complete quadriplegic from the shoulders down and completely dependent on a ventilator through tracheotomy.
After leaving the ICU, I was hospitalized in the “Alyn” Rehabilitation Hospital in Jerusalem (the city I lived in back then) and stayed there for almost 3 years. The major improvements in my recovery occurred within the following year, when I gained back the use of my biceps in my left arm and, no less important, weaned off the ventilator. Getting rid of the vent was made possible after working closely with a respiratory rehabilitation specialist and training my breathing muscles with a set of respiratory exercises a few times a day. I improved incredibly and about a year and a half into the training, I completely weaned off the vent.
Living with TM is a daily struggle. In the beginning it was hard to let go of the memories of myself as an athlete and as an active girl (socially, artistically and more). But the most difficult part has always been depending on others for the obvious things I was once able to do by myself. However, I long ago made a resolution not to let it limit myself in any way.
I have never lost hope and still believe that a cure can and will be found — it’s only a matter of time, funds and research. Lately, there has been such a major advance in spinal cord repair that it makes me feel very optimistic about the future, and my hope is that it will happen while I’m still here. Meanwhile, I hope that more and more surgeries and treatments will be developed to help us improve the quality of our lives and our independence.
Netta Ganor
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