Help fund Ehlers-Danlos (EDS) research!

UPDATE: Thanks to so many wonderful supporters, I met my original goal of $3,000, which was the minimum required for me to participate in this adventure. I've updated this goal to include helping me get to Cambodia, which I am not able to do on my own!

I committed to go the extra mile to raise funds and spread awareness 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. I will be joining Chief Scientific Officer Professor Fransiska Malfait and international Executive Director of the Ehlers-Danlos Society Lara Bloom to raise awareness and funds for much-needed research. Lara Bloom is both a professional and personal role model for me, in the way that she lives her life to the fullest despite her illness. Spending time with her has been on my bucket list for five years. Contributing to EDS research and building my life as a researcher has been a goal of mine for 12 years, and completing an epic outdoor journey has been on my bucket list for nearly 13 years.

Less than a year ago, I wasn’t even able to bike down the street. Growing up with EDS, although I became familiar navigating with my grandfather’s wheelchair, I never learned how to ride a bike. My muscles were weak; I couldn’t maintain an upright posture; I fainted multiple times a day; and, for a time, I couldn’t walk. After I taught myself to walk again, my cervical instability caused decreased sensation throughout the left side of my body, making balancing and proprioception difficult. Finally, this past November (2018!), at the age of 23 and after 11 years of physical therapy, I enlisted a friend for help with a related, longtime bucket list item. I asked him to teach me how to ride a bike. My body finally felt ready for the challenge, and soon a once-hazy dream became a clear, tangible, joyous reality. Today, riding is my primary mode of transportation, and every day that I am able to get out of bed and ride with the wind in my face feels like a day I’m winning a medal at the Olympics. I feel like I’m LIVING.

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders and are generally characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Each case is unique, and severity may range dramatically, even within families. Because connective tissues are building blocks of everything from our blood vessels to the lining of our stomachs to our muscles and skin, EDS can affect multiple bodily systems. I have postural orthostatic tachycardia syndrome (POTS), gastroparesis, chronic fatigue, mitral valve prolapse, chronic musculoskeletal pain, and symptoms of mast cell activation syndrome, all of which can be a lot to deal with on their own, yet in my case, they are all secondary to EDS.

It took me years to receive a diagnosis and even longer to receive appropriate care. EDS is poorly understood and not well known. As a child, while looking for answers, I was accused of making up my symptoms. My parents were accused of abusing me (fragile blood vessels make for easy bruising and seemingly spontaneous bleeding). Medical professionals didn’t believe me or my parents, I was refused proper care, and at the age of 13, I was taken away from my parents and almost lost my life. The past ten years have been an arduous journey, yet with the help of the Ehlers-Danlos Society and a determined mother, I have been able to connect with some of the few EDS experts, some of whom will be on this ride. Consequently, I have received better care, and my quality of life has improved. Still, my body struggles, and the EDS community needs answers.

Professor Rodney Grahame said, "[Few diseases] in the history of modern medicine [have] been neglected in such a way as Ehlers-Danlos syndrome."

The truth is, people with EDS share anecdotes about what they have done to improve their symptoms, and while this can and does improve the lives of people living with this condition, it is insufficient. We need research. In fact, right now, there are many research proposals ready to go. They just need to be funded. Help us raise funds and awareness so that it doesn't take years to get a proper diagnosis or access evidence-based care.

Here is how you can help:

• Donate money (even a small donation will let us know you're thinking of us)
• Share my story on social media (you never know who will read this and recognize the symptoms)
• Create videos, music, and arts. I would appreciate your creative ideas for awareness and fundraising events and would be so happy for your skills (videography, improv, singing, recording, organizing, etc.) to be alongside me in the adventure before the ride.

Thank you for joining me on my journey! 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. The goal of the Ehlers-Danlos Society is world-wide awareness as well as a better quality of life for all who suffer from these conditions, regardless of geography. My personal goal is to be a part of the research and make discoveries that meaningfully change the lives of people like me.