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Ehlers Danlos Syndrome assistance

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This started out as a fundraiser for my treatment regarding Lyme Disease. Unfortunately, Lyme was only the beginning. I was diagnosed with a connective tissue disorder called Ehlers Danlos Syndrome, specifically the hypermobile type. It has caused widespread pain and severely limited my mobility and has dramatically changed my life. Im still acquiring medical bills as Im seeing multiple specialists for the EDS but also its comorbidities. A large amount of my financial needs revolves around prescriptions, supplements, and items such as compression stockings and braces. My monthly prescriptions run almost $375 and another 2 are bi monthly and cost $83. :ORIGINAL: In early August I found a black legged deer tick on my forearm. I assumed it was only in there a few hours and proceeded to flush it.  It hit me so fast. Within 2.5 months my life completely changed. Some days my arms were too heavy to lift, I could no longer type or hold a pencil for longer than 10 minutes. I have constant tremors and joint pain. I cannot run or jump or lift heavy things anymore. At one point i was unable to walk and collapsed suddenly. Deiving is hard, i have vertigo and i have a lot of involuntary twiches. The pain is constant and goes from mild to so extreme all I can do is mentally push through and hope it gets better.  I spent about 2 weeks total in St Lukes hospital only to be told it was all in my head or that I had spontaneously developed crippling fibromyalgia at age 25 over 2.5 months. No one could tell me why I became so ill. They seemed to think i was fine despite having a fever of 103° and my WBC going from extremely low to high.  My hospital bills were through the roof. Half the tests that were done were with an out of network lab, so my insurance was unable to cover to entire bill. I had $150 copays for er visits, $50 for each specialist and $35 for PCP. I saw over 12 Drs. The copays alone were overwhelming.  Next came the prescriptions, i spent most of my money on them. Most didnt even work.  I have easily spent over $2000 on these bills, I had to leave work as well temporarily as I cannot physically do ny job anymore despite trying.  I was finally diagnosed with Lyme Disease officially when I went to Upstate University in Syracuse. But it had been a long fight with the medical system and sadly it is now stage 2 lyme and has impacted my central nervous system. I also likely have an autoimmune  disease that has yet to be determined which I am still seeking answers for.  I immediately had a PICC line put in my arm and started another round of antibiotics for the next month. I administer the infusions at home myself to save money as a home nurse was far too expensive. My infusions cost me $450 for the medication and a total of $200 for my labs and dressing changes that I have to travel over an hour away once a week to get to.  I am overwhelmed. I hate asking for help but at this point I have become very vulnerable and I want to be able to pick up my prescriptions instead of debating which ones I can live with out.  If you have an extra $5 to donate I am eternally thankful.  If you are not comfortable donating money, I have an Amazon wish list of some medical supplies I am in need of.  https://www.amazon.com/hz/wishlist/ls/O34AJH7IGMKY?ref_=wl_share Thank you.

Organizer

Samantha Yelof
Organizer
Rome, NY

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