Jesse Luce

Jesse Luce's Fundraiser

Support #myEDSchallenge and help me reach my goal! Make life better for my fellow zebas image

Support #myEDSchallenge and help me reach my goal! Make life better for my fellow zebas

Together we can improve the lives of all with EDS, world wide and that means the WORLD to me. Please and thank you for your support.

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I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the fundraiser in honor of family and friends who have suffered for various reasons due to this wildly understated condition. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!

I was diagnosed with Ehlers -Danlos many years ago, and since then I have experienced an array of symptoms associated with EDS ranging from just interesting, to excruciatingly painful. I have been to countless doctors over the years and almost all have had absolutely no idea what EDS was. I had to explain to them what it was so they could help me with whatever issue I was currently having. I have been on pain meds now for over 5 years with no sign of that changing ever in the future. And due to how little is known about the condition, no one has been able to identify exactly what's causing the pain. Because of pain and subluxations I spend most days dreaming of when I could do the most simple of tasks, such as carrying a galon of milk without hurting myself or dislocating my shoulder. I was just denied my disability case because the doctor that was appointed to my hearing had out dated and. frankly inaccurate information on EDS. This is just a small amount of the trouble this condition has caused me, and I know many who have experienced the exact same plight. My worst fear is that my children will suffer as I and many others have, even just trying to find a doctor who knows what EDS is and the havoc it wreaks upon ones body and over all quality of life. So please help me stop this nightmare by donating to this cause. Thank you.


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 the awareness month challenge by donating. Thank you!