Help us raise awareness and funds for Ehlers-Danlos Syndromes!

We have committed to go the extra mile to spread awareness and raise funds for the Ehlers-Danlos syndromes, so we joined The Ehlers-Danlos Society’s Awareness Adventure Challenge to e-cycle through Cambodia and Vietnam in February 2020. We will be joining the Ehlers-Danlos Society Chief Scientific Officer, Professor Fransiska Malfait and CEO, Lara Bloom to raise awareness and funds for much needed research.

We are doing this challenge for the people who can't, like our daughter, Erin. As parents it doesn't seem fair that her sixty something parents can undertake this challenge when everyday life is already a challenge for her. Ehlers-Danlos Syndromes is a group connective tissues disorders that can be inherited and are generally characterized by joint hypermobility, skin hyperextenisbility and tissue fragility. Each case is unique, and severity may range dramatically, even within families. Since we have connective tissue everywhere it can impact other body functions. Our daughter had diagnoses of Postural Orthostatic Tachycardia (Pots), Gastroparesis, Interstitial Cystitis, Chronic Fatigue Syndrome and others before the EDS diagnosis and then others followed such as atlantoaxial instability, tethered spinal cord, mast cell activation syndrome. The irony is that if she talked more about the joint dislocations and subluxations perhaps a rare doctor might have thought about EDS but when you black out 40 times a day it doesn't seem as important. It took over 24 years to get her EDS diagnosis but it led us to finding this group and meeting others with all these crazy problems.

Professor Rodney Grahame said "no other condition in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos Syndrome".

Research is our best hope for improving the lives of people living with this condition. Through my exposure on the Society's board of directors, I know that there are many research proposal requests waiting to be funded as well as symposiums and the ECHO program to educate medical professionals. Help us raise awareness so it doesn't take 24 years for a diagnosis. How can you help...

• Donate (even a small donation will let us know you're thinking of us)
• Share on Social Media (you never know who will read this and recognize the symptoms)
• Join us and see the world for a very good cause! (did I mention there are e-bikes)

The Ehlers-Danlos Society is a global community dedicated to saving, and improving the lives of, those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. Our goal is world-wide awareness, and better quality of life for all who suffer from these conditions, regardless of geography.