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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?

It means I have a “mistake” in my genes that causes my body to make defective connective tissue. Connective tissue lives all throughout the body, so hEDS causes problems in lots of places. Just a few of these problems:
– POTS: postural orthostatic tachycardia syndrome means that you get sick, dizzy, fatigued, and dehydrated upon standing up. you overheat easily, your blood pools, and you get nauseous.
– Gastroparesis: your body doesn’t understand how to digest food, so you end up with pain, nausea, vomiting, bloating, IBS, and total loss of appetite.
– MCAD: mast cell activation disorder is when you have extreme allergic reactions to harmless, everyday exposures like scents, body washes, and medications.
– Lipedema: this is an often-painful condition that mimics obesity. Your arms and legs remain permanently and painfully swollen and inflamed, and your body becomes misshapen.
– CVID: common variable immunodeficiency disease simply means that you get frequent severe infections, most commonly of the ears and respiratory system.

Updates (40)

November 5, 2021

November 4, 2021

In honor of Giving Tuesday, #TealDeal is Back! Between midnight ET on Tuesday, November 30 and 3 a.m. on Wednesday, December 1, Help Hope Live will cover the 2.65% of the credit card fee for all online donations in honor of a client. Thanks for participating in Giving Tuesday!

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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