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 by participating in the #myEDSchallenge. Please support me by donating to my fundraising page. Together, even a small amount like $1 can make a massive difference!

Hi everyone! Thanks so much for checking out my page. My name is Emma, and I have Ehlers-Danlos Syndrome type III. I’m 19 years old, and a proud advocate of not only EDS, but mental illness and autonomic disorders- both of which I have. Ehlers-Danlos syndrome is a genetic connective tissue disorder- in short, our bodies produce defective collagen: a protein found nearly everywhere in the body, which makes it so difficult to get a diagnosis: you could have a hip that keeps dislocating and a lot of cavities and no one would think they could be connected. But that’s exactly how it works in EDS! There are 13 types of EDS, at varying levels of rarity. I was born with the disorder, but I didn’t start experiencing symptoms til I was 5. I got diagnosed just 2 months ago- that’s 14 years of being told it was in my head, or doctors flat out refusing to listen. I was just a hypochondriac, right? Nope. Awareness means so much to me. Did you know that most doctors have no idea what EDS is? You tell them you have it and they: google it, ask you to repeat it like they didn’t hear you and then pretend they know it what it is. This is damaging to those of us: we can’t take (unless no other option) a certain class of antibiotics because it could just rupture our heart. We could wake up mid-surgery because we metabolize anesthesia too fast. If doctors don’t know this, our lives are on the line. Through online EDS groups, I’ve met people just like me who are the most support I could ever ask for. I owe my sanity and diagnosis to the rheumatologist who saw me once and believed me, my therapist who never doubted that it wasn’t psychological, and my amazing friends and family: Zebra or not!

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.