Published: 10/07/2023 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society hosts a life-changing vascular Ehlers-Danlos syndrome family camp 

The inaugural family camp for vascular Ehlers-Danlos syndrome (vEDS), organized by The Ehlers-Danlos Society in collaboration with The VEDS Movement, took place from July 7-9, 2023, at Camp Joy in Ohio, USA. 

Living with vEDS 

Vascular Ehlers-Danlos syndrome is a genetic connective tissue disorder that renders blood vessels and organs fragile, increasing the likelihood of tearing. This condition poses life-threatening complications such as aneurysm, dissection, artery rupture, and organ rupture. 

Creating a sense of community 

Recognizing the importance of community and connection for individuals living with vEDS or having family members diagnosed with the condition, the camp provided an invaluable opportunity to meet others with the same genetically-confirmed diagnosis. These individuals understood the challenges and uncertainties associated with vEDS. 

An extraordinary experience 

Camp Joy Ohio served as the venue for this three-day event, made possible by generous donations covering registration fees, accommodations, camp activities, and meals for participating families. 

For many attendees, this was their first time meeting someone else living with vEDS. The camp provided an environment for building relationships, with children and parents spending quality time together. 

Throughout the weekend, the community engaged in various activities such as basketball, rock painting, hiking, abseiling, swimming, and the timeless tradition of enjoying S’MORES. These experiences made long-lasting memories and friendships. 

People with vEDS often need to make lifestyle adjustments to minimize the risk of injury. As a result, they may have limited opportunities to participate in sports and activities, potentially missing out on social experiences with their peers. The camp was designed with safety and enjoyment in mind, enabling families to relax and partake in an unforgettable experience. 

“We had an amazing experience at Camp Joy! The nature surroundings were beautiful, the activities fun for the whole family, and the staff are great! Our kids particularly enjoyed making s’mores by the campfire and watching the fireflies in the evening.

“For us, it was the first time meeting people with vEDS outside of our own family. We found it really comforting to see that other families share some of our experiences with vEDS and to see that even if we live with a rare condition we are not alone.

“We enjoyed hearing about everyone’s stories and sharing tips about everyday life with vEDS.It was really nice meeting the doctors and getting their input. They are both knowledgeable and compassionate about the struggles of living with vEDS.Overall, we come out of this experience with a heightened sense of connectedness and community. Thank you for making this experience possible for all of us!”
Pia Rosling

Future plans 

The Ehlers-Danlos Society is thrilled to be planning and fundraising for upcoming family camps that cater to its global community affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The organization aims to create a secure and nurturing camp environment where children, adolescents, and families living with all types of EDS and HSD can come together. 

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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