Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Hi all! My name is Lily Baker, I am 19 years old, and I have hypermobile Ehlers-Danlos syndrome (hEDS).

I was first diagnosed with hEDS in 9th grade after countless doctors appointments and years of mysterious pain. Ehlers-Danlos syndromes are a group if rare, inherited disorders that impact your connective tissue (joints, blood vessels, skin, etc.). People with EDS often have unstable joints, chronic pain, dysautonomia, gastrointestinal issues, and arterial fragility. Early diagnosis is important so that people can receive specialty care and look out for the more dangerous symptoms. Unfortunately, far too many people are denied treatment or are treated incorrectly because of misconceptions and a lack of understanding about EDS. This is why awareness is key!

This May, during Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders Awareness Month, I am raising money for The Ehlers-Danlos Society, an organization that helps fund EDS research and supports those with EDS or HSD.

Even if you cannot donate today, I encourage all to explore https://www.ehlers-danlos.com/ to learn more about EDS!