Support #myEDSchallenge and help me reach my goal!

I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!

“I’ve had Ehlers-Danlos Syndrome my whole life, but the first memorable symptoms started at age two when my double vision became noticeable. I couldn’t control my eye movements very well. It wasn’t until age 15 that I had corrective surgery. Now I’m 44 and look back on all the years of joint dislocations, clumsy body movements, injuries from falls, persistent “growing pains” and nonstop visits to the doctor and I wonder: Would my life have been different had doctors known about EDS? Even now, they have to google it during my appointments and think it’s “just that stretchy skin disease.” (Wrong) While it’s progressive and there’s no cure, certainly more awareness could have made things easier for me and my family. I was bullied to tears repeatedly by my peers for being a weakling, bullied by doctors by their accusations of hypochondria, and ignored by many who should’ve known better-in all camps. The ignorance persists today, even while many patients are in wheelchairs from their multiple EDS issues. I hope that doesn’t become me, and I hope no other child has to grow up with such pain and lack of empathy.”

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Symptoms that are often seen across all types are hypermobile joints, (that can move farther than normal), stretchy skin, & fragile tissues. Each case is unique and severity may range dramatically, even within families.

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

Please support me as I overcome my challenges with EDS to participate in May’s awareness campby donating. Thank you!