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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 (36)

July 16, 2021

Something big has happened! Something VERY big!

It all started when a friend tagged me in a post on Facebook.

In the post, a local news anchor said, “Good Morning! Do you know someone that doesn’t have health insurance, pays out of pocket for care/prescriptions? I have a few questions. Please send me a personal message.”

And before I could respond, the news anchor sent me a message herself, and from there, we scheduled a meeting! I was going to be on the news! I got dressed up and waited.

But then, her boss postponed the story for another day. I felt a bit defeated, but that’s just how news goes, I think. But she still called me the next day, and she came to my house and interviewed me!

I was so nervous, but it’s something I knew I needed to do. I could end up helping someone else, or even myself somehow. I can’t be the only one going through this!

That night, I got a request from someone I didn’t know on Facebook. She said she saw my interview and knew how to help. She’s an insurance broker for the health insurance Marketplace and she had dealt with cases like mine before.

So she walked me through the online application, and long story short, she got me enrolled in Ambetter health insurance: No monthly fees, no deductible, and free generic meds! Apparently there is only one very specific amount you can enter for projected income, and it’s not enough to be considered “gainful employment,” so it won’t affect SSI. My coverage starts August 1st.

13 years of fighting the system, and I won!

June 28, 2021

Because the Texas Roadhuse fundraiser was successful, I will be holding more fundraisers with them in the future.

In the meantime, I’d like to go ahead and get my POTS diagnosed, and the doctor I’ve chosen is Dr. Carmine Oddis.

In order to get my POTS symptoms diagnosed, I’d need a tilt table test. So I called Dr. Oddis’s office, and Dr. Oddis wants an EKG and echocardiogram first. Those will be $250 and $220 respectively. From there, Dr. Oddis may or may not prescribe a tilt table test, which would be done at a hospital. I can get financial assistance from the hospital, but not from Dr. Oddis. So I would have to pay $470 out of pocket for just ONE appointment. I can technically afford it thanks to donations, but remember: I still have to pay $200+ for my appointment with Dr. Friedman in September. Slots fill up fast, so I went ahead and made the appointment for July 20th at 3:15 pm. My caseworker should be able to get me there.

Then, about 2 months from then, I should have my appointment with Dr. Friedman. I’m hoping to have two more diagnoses (POTS and Cushing’s) before the year is over.

That’s about all there is to report for now, so . . . please donate, and wish me luck!

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Guestbook

November 24, 2020

This woman is a fighter. It’s a damn fucking shame that as Americans we tell people that are chronically ill, that they don’t matter by refusing to give them ssi. This woman had been fighting the good fight for many years and she is one of the people that actually needs it. Good luck, hopefully you’re life can get straightened out soon.

Anonymous

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