Help my herd be heard and make a difference in the lives of those with EDS and HSD

I committed to go the extra mile to spread awareness and raise funds for the Ehlers-Danlos syndromes, so I joined The Ehlers-Danlos Society’s Awareness Adventure Challenge to e-cycle through Cambodia and Vietnam in February 2020. Together, even a small amount can make a huge difference in helping me reach this epic goal. Please support me by donating to my fundraising page.

After years of misdiagnoses and doctors telling me me all of my problems were in my head, I was in a not so good place. I felt hopeless. I felt lost. I was close to done. Then one doctor changed my life. All it took was the words, "You have Ehlers-Danlos Syndrome." Within 30 minutes of diagnosis, I found the Ehlers-Danlos Society- though at the time it was EDNF. I found answers. I found out I wasn't alone. Two months later, I attended my first conference and my life was changed forever. I learned so much and I found my herd. I found my home. My goal is to help others find that same feeling, that sense of community, and the information they need to live their best lives with EDS and HSD. Those that know me know I don't do things the easy way. EDS has challenged me more than anything I ever thought could, but that doesn't mean I'm slowing down, that just means I have to be more... flexible. Some of you might think I'm crazy for biking across Cambodia and Vietnam, but this is my chance to do something BIG- not just to give back to the foundation that changed my life but to help those that are in the shoes I was in so many years ago.

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

Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility (JH). HSD are intended to be diagnosed after other possible answers are excluded, such as any of the Ehlers-Danlos syndromes (EDS) including hypermobile EDS (hEDS). HSD, just like hEDS, can have significant effects on our health.

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.

Please support me as I overcome my challenges with [EDS/HSD] by exploring Cambodia and Vietnam on The Ehlers-Danlos Society’s Awareness Adventure Challenge.