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My name is Deanna Brownlee. I’m 35 years old, and I have hypermobile Ehlers Danlos Syndrome (hEDS). What does that mean, exactly?

Updates (9)

February 20, 2020

After weeks of patiently waiting, I finally saw my doctor, who was supposed to fill out my lawyer’s paperwork, then I could just focus exclusively on my trial from there. But, as he stated, “we can’t do that here.” I have different game plan in the works, though. My doctor gave me the name of another local doctor who CAN fill out the type of paperwork I have. So I’m going to verify that this other doctor will do it, and if not, call my lawyer and as them how to proceed. From there, I’ll try my best to plan transportation, coordinate payment, and then deal with medical records if he wants them. My hearing is 21 days away, so I have GOT to get this done! It’s crunch time! Wish me luck!

January 24, 2020

It’s update time!

My SSI hearing is looming closer and closer. The official date is March 12, 2020. A few days ago, I had one last phone meeting with my lawyer. She said she’d be sending me one last bit of paperwork that she wanted my doctor to fill out. She also wanted me to make a very specific, very descriptive, detailed list of how my symptoms affect my ability to function. I have written many things throughout my life; this one will surely be the most important.

Another development to note: I have had to find a THIRD immunologist. The first refused to see me, and the second has stopped making an effort to diagnose me. As they have stated, “There is no further treatment necessary at this time.” But all they did was order a single round of tests at my urging . . . and they’re already giving up. So I managed to get an appointment on the same day and with with the same new doctor as a friend of mine. The doctor is almost 2 hours away, and it looks like I’ll be carpooling with her. Funds raised from HelpHopeLive will pay for it. So plans for that are about 90% finalized. Unfortunately, the soonest I could get in to see this new doctor is April. So I won’t get her documentation before my hearing. But maybe the eeffort I’m making will count for something.

I’m afraid that I will have to keep this update brief, as typing has become more and more difficult with my progressively weakening hands. The aching and weakness is causing me to skip letters and end up with pain that starts in my fingers and travels to my wrists and then my forearms. I will be getting those ring splints as soon as I possibly can.

Thank you all for listening!

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July 9, 2019

She says, "Financial stability and health insurance could be on the horizon for me after 11 years of fighting. I can do this!"

Anonymous