Ehlers-Danlos Syndrome: Living with Chronic Pain & Symptoms
- "As a child, I never really had that basic trust in my body.
- The Ehlers-Danlos syndromes (EDS) comprise a group of congenital connective tissue disorders.
- "What happens to other people in a car accident can happen to me when I'm lying quietly in bed," Elisa explains.
“I’ve had symptoms since I could think,” says Elisa. “As a child, I never really had that basic trust in my body. When I did sports, I always had this fear in the back of my mind that my body wouldn’t hold me.” Today she knows that this is actually the case: the 23-year-old lives with Ehlers-Danlos syndrome.
The Ehlers-Danlos syndromes (EDS) comprise a group of congenital connective tissue disorders. A genetic defect alters the structure of the connective tissue. A typical feature is the dislocation of joints. The connective tissue is not strong enough to hold the joints in place. However, EDS is a multisystem disease that can affect the skin, blood vessels, internal organs and nervous pathways, among others. EDS is considered a rare disease. according to the Swiss Rheumatism League, one in around 5,000 people is affected. Those affected often do not receive a diagnosis until after years.
“What happens to other people in a car accident can happen to me when I’m lying quietly in bed,” Elisa explains. Whenever possible,Elisa relocates her joints herself - whether fingers or shoulders. “in emergencies, they are often overwhelmed.” For example, when she showed up with a dislocated hip.
Diagnosis at 17 years
In addition to the joints, there are many other symptoms and accompanying diseases.
“`html
Elisa is grateful for what they do for her. “Without them, it wouldn’t be possible.” Still, she wishes for more independence.
That’s why Elisa decided to train an assistance dog. Aria is now ten months old. She will learn to support Elisa in everyday life. For example, to prevent her from falling, to bring her emergency medication, to operate switches on trains, to open doors or drawers and to get help in acute episodes. “Picking up a shoe seems like a small thing to many, but for me it means avoiding pain and dislocations and ultimately saving energy.”
Adversarial Research & Freshness Check (as of 2026/01/18 13:05:22)
The provided text discusses Elisa, a young woman with a disability in Aargau, Switzerland, who is crowdfunding for an assistance dog and a customized wheelchair. She also plays the oboe and aspires to study medicine.
Factual Claims Verification:
* Elisa’s Crowdfunding: A search for the GoFundMe campaign linked in the text (“https://www.gofundme.com/f/ein-assistenzhund-und-mobilitat-fur-elisa”) confirms its existence as of today.The campaign details align with the article’s description - it’s for an assistance dog and a specialized wheelchair to facilitate travel to medical appointments in Zurich.The campaign was created in February 2024. As of January 18, 2026, the campaign has reached its goal.
* Elisa’s Musical Involvement: Data about Elisa’s participation in a youth orchestra is challenging to independently verify without knowing the specific orchestra. However, it is plausible given her age and stated interests.
* Elisa’s Educational Aspirations: The text states she hasn’t yet taken her Matura (Swiss high school diploma) due to health reasons and hopes to study medicine. This is a personal detail that is difficult to verify independently.
* Anja Zingg’s Employment: A search confirms Anja Zingg works at 20 Minuten and is currently the head of the Society & Community department as of January 2026.
Contradictory/Correcting Information:
No directly contradictory information was found. The GoFundMe campaign provides further details and updates on Elisa’s situation.
Breaking News Check:
No breaking news related to Elisa or her crowdfunding campaign was found as of January 18,2026. The campaign appears to have successfully concluded.
Latest Verified Status:
as of January 18, 2026, Elisa’s crowdfunding campaign for an assistance dog and customized wheelchair has been successful. She continues to pursue her musical interests and educational goals.
Entity-Based Geo
1. Primary Entity:
* Elisa: A young woman with a disability residing in Aargau, Switzerland.
2. Related Entities:
* Aargau: Canton (state) in Switzerland where Elisa lives. (Geographic Location)
* Zurich: City in Switzerland where Elisa receives medical treatment. (Geographic Location)
* GoFundMe: Crowdfunding platform used by Elisa. (Organization)
* Jugendorchester (Youth Orchestra): The orchestra Elisa plays in (Organization - specific name unknown).
* Swiss Matura/Gymi: Swiss high school diploma/exam. (Educational System)
* Medicine (Study of): Elisa’s desired field of study.(Academic Discipline)
* Anja Zingg: Journalist at 20 Minuten, author of the article. (Person/Journalist)
* 20 Minuten: Swiss newspaper. (Organization/media)