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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.

These comorbidities are just a few of the diseases that hEDS causes. The disease also causes frequent dislocations, brain fog, heart valve issues, extreme fatigue, unrestful sleep, pain, insomnia, and a host of other problems. While it is not guaranteed to be fatal, this disease certainly can be. And there is no cure. All I can do is try to diminish the symptoms as I encounter them, try to control the pain, and advocate for myself and others.

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