Raise Awareness for Ehlers-Danlos Syndromes Patients

This disease has been in my family for generations. I can identify it in family anecdotes going back to my great grandmother. But, none were diagnosed until my diagnosis in 2017, at the age of 48.

I'd lived for the previous 12 years in undiagnosable, disabling pain. My predecessors lived for decades in it. Join me in building real change. Let's support these misunderstood, undertreated patients and make a difference in their lives and in those of their children.

I'm able to walk independently again. I'm also able to think clearly again. So, I feel compelled to do something good and make the world a better place, both at large, and in the private lives of many friends. I created the DFW EDS 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. My personal diagnosis came after a fibromyalgia diagnosis, and after I'd been out of work and on disability for many years. There are things that can be done to help symptoms of the disease in some cases. But, that can only happen if the correct diagnosis is made. It's only because of this correct information that I do walk again. (Finished a half-marathon on Thanksgiving!) That I drive again. That I can think well enough to attempt organizing an event like this. I saw over 30 doctors before I was correctly diagnosed with HEDS and few other things. That's a lot of unnecessary pain to live in. Help me put a stop to that for others.

Donations are critical to raise awareness and visibility of EDS among the general public, as well as in the medical community by making professionals aware, advancing research and treatments. Check out my fundraising page and please consider making a donation to help me reach my goal of [Your Fundraiser's Goal Will Automatically Go Here].

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