Whats on my mind? My daughter, Emily, is on my mind. Emily is 17 and a senior in high school. She goes to a middle college high school taking college classes and high school classes at the same time. She has been a volunteer at Henry Mayo hospital since freshman year. She has an internship at a physical therapy office and she has dreams of getting into Berkeley next year. She has run in and completed the L.A. Marathon. Why do I tell you this? To brag? Well always, lol…. but there is another reason…. Actually, I tell you this so I can also tell you that life was not always this easy for Emily. Emily has a disorder called Dystonia. DYTI Generalized Dystonia, to be more specific. Dystonia is neurological disorder that is unknown to most people. However, it affects no fewer than 300,000 people in the US and Canada alone. There are many forms of Dystonia, and the symptoms may vary, but they all share repetitive, patterned and involuntary twisting of muscles and muscle contractions. Emily has a genetic form of Generalized Dystonia, which means many parts of her body are affected, legs, hands, arms, etc. Emily’s symptoms appeared out of nowhere when she was 8 years old. By age 12, she was using a wheelchair 95% of the time. The dystonia caused her feet to twist involuntarily so that walking became near impossible and eventually she lost the use of her right hand. The symptoms were rapidly spreading to other parts of her body. Finding a diagnosis was difficult and a very long process, which is too much to go into, and not the purpose of this post. It did, however, take two years of seeing doctors at UCLA, USC, Cedar Sinai, etc and loads of tests on Emily, to finally find a doctor who put the symptoms together and figured it out! Fantastic! A diagnosis means treatment! After trying various medications, to no avail, Emily underwent Deep Brain Stimulation the summer before starting Jr. High School. This procedure involves the implantation of a pacemaker like device (she has two, to treat both sides of her body) which sends electrodes through wires that are placed deep into the brain to target the affected area. This procedure has been nothing short of a miracle for Emily and for us, and has given Emily her mobility and her life back. However, DBS treats the symptoms only, and is not a CURE. Also, is not always effective for everyone and is not always successful for many other types of Dystonia. Again, DBS is NOT A CURE, and if Emily’s device is turned off or needs to be removed for any reason, ALL of her symptoms return, and it is possible they have progressed since her DBS procedure. Now the purpose of this post… A CURE IS NEEDED FOR DYSTONIA. SEPTEMBER IS DYSTONIA AWARENESS MONTH so I am doing my part to share Emily’s story so people can become knowledgeable about it, know the symptoms to help increase diagnosis, and avoid misdiagnosis, and to raise awareness so a cure can be found. For more information on all types of Dystonia, please go to dystonia-foundation.org, and of course a donation of any size is always welcomed as well. Thank you for letting me share Emily’s story.
Posted on: Wed, 17 Sep 2014 16:38:07 +0000
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