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!

It took 29 years, 40+ doctors in NH, Massachusetts (including every large Boston hospital), CT, countless procedures, scans, testing, hundreds of medication trials, lifestyle changes, unnecessary mental health diagnosis and treatments, ruined relationships, injures, loss of ability to work and becoming bedridden to finally be diagnosed. It took moving to Maryland, extreme disease progression , partly due to an attempt to go back to school and hike/exercise daily, and a lot of perseverance to obtain diagnosis. I researched constantly, I reached out, I tried everything and more.

In my early 20s I came across Ehlers-Danlos syndrome and dysautonomia in my research. It was so much like me! I printed out information on the conditions to bring to my next appointment in Boston. I brought the information to local neurologists, to family and friends, to therapists and to many different specialties. One doctor even told me that if I had EDS I should be dead by then! By and large, minus a few loved ones, I was brushed off, labeled a dramatic hypochondriac or mentally ill.

Since diagnosis I’ve had to catch up on 29 years of unchecked damage. I don’t have a fulfilling career, or any career at all...I don’t have a family of my own, my passions make me ill (animal rescue, hiking, activities with friends...). But I do have hope. And hope is enough most days. Because the truth is...

I'm one of the lucky ones!

There are countless others still awaiting diagnosis. Awaiting hope! There are many of which awareness of their disease could impact progression, injury, surgical needs and their relationship with theirselves and others. Spread hope! Everyone has struggles and pain. And everyone can impact the pain of others in hope gifting ways. No matter what ailment you live with or what challenge you face there is hope. Faith, hope and love. 3 little words. 3 life changing gifts. #ItsOurTime

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, and my fellow EDS Zebras, by donating as we overcome challenges with EDS to participate in this fund raising, awareness widening endeavor! Thank you with all my heart!