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Hello, my name is Amber and I suffer from progressive Generalized Dystonia and hand Dystonia, anxiety, and depression(Both of which are two leading issues associated with Dystonia- comparable to PTSD). Dystonia is a painful neurological disorder that causes muscle contractions that cause abnormal movements or postures and affects more than 300,000 people in the United States and Canada alone. At this time there is no cure for Dystonia, but there are some treatment options that have proven to lessen symptoms such as medication, Botulinum Neurotoxin Injections,DBS Surgery (Deep Brain Stimulation).
My symptoms started when I was a baby- I would often times wake up crying in pain, or sleep in odd positions. As I got older, the more physically active I was, the worse I got. Often times while playing with friends my legs would cramp, or my ankle joints would turn and lock into place for up to a week. Finally by the age of 12 my doctor did more tests and diagnosed me with Dystonia, ordering me to stop all physical activity except for light walking and specific exercises. Soon after I was diagnosed with depression and put on anti-depressant medication. After I got used to my new lifestyle, I seemed happier and chose to stop taking my medication with the OK from my doctor. For a few years I did fine, but as I got older (age 15) my symptoms progressed, my depression returned, and I started to struggle with anxiety issues both at home and socially. I began to start having what many with Dystonia call "episodes" or "attacks" - extreme pain in either my knees or ankles, causing me lay in the fetal position and cry while stretching and moving my legs uncontrollably, as if it's the only thing that gives any relief when in reality it only makes it worse. Unfortunately by this time, I had lost my health insurance.
I am now 25 years old, no longer have an income and unable to work due to painful muscle spasms and cramping (feet, legs, lower back, hands, and arms), joint pain and locking, both hips to often times to be out of place and get "stuck" as well as lower back pain, "episodes", severe anxiety and depression. I also get an extremely painful, cold tingling pain that goes from the tendons behind my knees down to my toes, making me unable to walk and a burning pain that goes from my left hip down to my knee while lying down. Some symptoms have progressed faster as I am currently without a bed and sleeping on the floor. I, like many others, am waiting for my SSI appeal. I am finally receiving health insurance benefits..but for the last 8 months, I have not been able to leave me home due to my vehicle needing to be fixed. This means I have not yet been able to see a primary doctor for proper medication, Neurologist, chiropractor to reset my hips, or simply get out of the house to improve my mental health.
Any donations received will be going towards fixing my vehicle. If I receive more donations than the amount needed, funds will then go towards a proper bed.
Please consider making a donation of any amount so I can soon begin the journey to get the physical and mental help I desperately need. If you are unable to donate, please share
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