May Marks Ehlers-Danlos Syndrome Awareness Month As Southern Maryland Support Group Shares Stories Of Resilience

LEONARDTOWN, Md. — People living with Ehlers-Danlos syndromes (EDS) often face years of unanswered questions, chronic pain and misunderstood symptoms before receiving a diagnosis. During the May 19 meeting of the Commissioners of St. Mary’s County, local leaders recognized those challenges by proclaiming May as Ehlers-Danlos Syndrome Awareness Month.

Commissioner Eric Colvin presented the proclamation, recognizing EDS as a group of inherited connective tissue disorders affecting approximately 1 in 5,000 people and highlighting the importance of education, awareness and support. The proclamation noted that symptoms commonly include joint hypermobility, tissue fragility and chronic pain, while related hypermobility spectrum disorders can contribute to fatigue, gastrointestinal issues, headaches and other long-term health complications.

County commissioners also acknowledged that many individuals with EDS require care from multiple specialists and that increased awareness can help reduce stigma while improving understanding for affected families. The proclamation formally declared May as Ehlers-Danlos Syndrome Awareness Month in St. Mary’s County and encouraged residents to learn more about the disorders and support those living with them.

Local Support Group Grows From Isolation To Community

Following the proclamation, Katherine Stone, founder of the Southern Maryland EDS Support Group, shared her personal experience navigating life with hypermobile EDS and the challenges that came with seeking answers.

“Please bear with me as I read this,” Stone told commissioners. “I have brain damage from EDS complications, making speaking from memory very difficult.”

Stone described years of isolation during her search for understanding.

“Years ago, when I was first navigating hypermobile EDS, I faced isolation and blank medical stares, which pressured me to read and educate myself with peer-reviewed journal articles every chance I got,” she said.

According to Stone, a conversation with a local physical therapist eventually changed her outlook.

“Eventually, a local physical therapist gave me a spark of connection, telling me I wasn’t alone,” Stone said. “The spark became our support group.”

What began as “a handful of strangers meeting here in Leonardtown,” she said, has since evolved into a Facebook-based support community with more than 500 members across Southern Maryland.

“Today, we’re a thriving Facebook community of over 500 members supporting all of Southern Maryland counties, with a large population right here in St. Mary’s County,” Stone said.

Understanding A Complex Disorder

Stone explained that because connective tissue exists throughout the body, EDS can affect multiple systems at once.

“EDS impacts the entire body, causing joint instability, heart palpitations, chronic pain, migraines, stomach and digestive issues, unexplained allergies, severe fatigue — the list goes on,” she said.

The syndrome has no cure, according to the proclamation, and individuals often manage lifelong symptoms through coordinated medical care.

Stone encouraged anyone experiencing unexplained, multisystem symptoms to seek information and support through the local organization.

“If you’re struggling with multisystemic, unexplained symptoms, please visit our website … to learn more about EDS and our group,” she said.

She thanked the county commissioners for publicly acknowledging the condition, calling the proclamation a significant moment for the community.

“We sincerely thank the St. Mary’s County Commissioners for declaring May as EDS and HSD Awareness Month,” Stone said. “This provides monumental validation for our community.”

Her remarks concluded with a message directed toward others still searching for answers:

“To any zebra looking for their team, our doors are open,” Stone said. “You do not have to carry this weight alone.”

(The term “zebra” is commonly used within the EDS community, referencing a medical teaching phrase: “When you hear hoofbeats, think horses, not zebras,” symbolizing patients with rare conditions whose symptoms may initially be overlooked.)

The Southern Maryland EDS Support Group serves residents across St. Mary’s, Calvert and Charles counties and offers peer support, education and community resources for individuals and families affected by Ehlers-Danlos syndromes.

About Ehlers-Danlos Syndrome

Ehlers-Danlos syndromes are a group of inherited connective tissue disorders affecting collagen — a protein that helps provide strength and flexibility to skin, joints, blood vessels and other tissues. Symptoms vary by subtype but may include chronic pain, frequent joint dislocations, fatigue, digestive issues and cardiovascular complications. Awareness efforts aim to improve earlier diagnosis, patient support and public understanding.

You can watch the full proclamation below at 22:13.

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