We can bring awareness to Ehlers-Danlos Syndrome!

I wanted to do something good and make the world a better place. So I joined the DFW Awareness Walk for The Ehlers-Danlos Society.

The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

I am writing this from the comfort of my bed, with a back brace on and heating pad on my knee. Today is a bad day. Some days are good and some days are bad. Last May, I was sitting at my desk in my office and all of a sudden, my chest felt heavy, like an elephant had sat on it. I couldn't breathe, I was seeing spots, and I started to panic. My friend and co-worker had to call an ambulance. The paramedic said that I had a panic attack. It was Cinco De Mayo, he told me "Calm down and have some dollar margaritas". Now, I have suffered from anxiety my whole life, and I have had plenty of panic attacks. I was sure...this was no panic attack. Weeks later, after speaking with my sister who is incredibly smart and refuses to give up, we decided to go see a cardiologist that specializes in Ehlers-Danlos Syndrome. That day he diagnosed both my sister and I with EDS. As it turns out, I was right...it wasn't a panic attack. One of my ribs had a subluxation (partial dislocation) and was pressing on my lung. That is why I am doing this. If there were more awareness of this chronic illness, perhaps we would not have to suffer for as long as we do. We need awareness so that getting a diagnosis is not the uphill battle that it is now. In medical school, students are taught "When you hear hoof beats, think horses, not zebras" - meaning, don't jump to conclusions...its probably a panic attack, its probably anxiety, its probably depression, its probably IBS, its probably stress headaches, its probably GERD, its probably growing pains, its probably your weight...all of the answers that I was given before finally getting the true diagnosis and answer to my questions. The truth is that sometimes, it is a zebra.

Donations are critical to raise awareness and visibility of EDS among the general public, as well as advance research and treatments. Check out my fundraising page and please consider making a donation to help me reach my goal of $5,000.

Give today.

Giving online is easy and fast, and your support will make a real difference. I appreciate your help!

[Your Fundraiser's Name Will Automatically Go Here!]Just a small donation will go a long way to helping me meet my goal for The Ehlers-Danlos Society