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By Lucy Notarantonio
Senior Reporter
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A seemingly healthy 26-year-old woman died suddenly, leaving her family desperate for answers. Weeks later, an autopsy revealed a possibility they had never even considered.
Ali, an art student from Florida living in Paris, France, may have been living with an undiagnosed form of Ehlers-Danlos syndrome (EDS), a group of inherited disorders that affect the body's connective tissues.
Now her sister, Marisa, has shared what happened to her sister, who passed away on May 26, 2024, for the first time.
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The 34-year-old said: "I finally feel comfortable and ready to talk about it."
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Speaking about the day her sister passed away, she explained both she and her mother, were visiting at the time and staying in a nearby hotel.
"We walked very far that day, and that night she was on the phone to my mom when the line suddenly went flat," Marisa said.
Alarmed, Marisa and her mother rushed to Ali's apartment. When she did not answer the door, they called French emergency services.
Marisa told Newsweek: "She appeared to be healthy. Her death was such a shock."
After reviewing her sister's autopsy with multiple doctors in South Florida, they came to the conclusion that her sister had vascular Ehlers-Danlos syndrome (vEDS).
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect the body's connective tissues, often causing unusually flexible joints, stretchy skin and fragile tissues that are more easily injured, according to The Ehlers-Danlos Society.
"Ali was always very flexible," Marisa said.
"Growing up, she complained of aches, pains and fatigue," she continued. "She also bruised easily, and her skin was translucent."
"We believe she suffered an abdominal aortic rupture, and it likely killed her instantly," Marisa said.
According to UC Davis Health, an aortic aneurysm is a bulge in the body's main artery that can develop in the chest or abdomen.
While many aneurysms cause no symptoms, risk factors include smoking, high blood pressure and high cholesterol. Certain inherited connective tissue disorders, including Ehlers-Danlos syndrome, can also increase the risk by weakening the walls of blood vessels.
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What Is Vascular Ehlers-Danlos Syndrome?
Vascular EDS, one of the rarest forms, is estimated to affect between one in 100,000 and one in 200,000 people.
Features of vascular vEDS can include:
- Weak blood vessels that can tear, burst or develop dangerous bulges (aneurysms)
- Fragile internal organs that may rupture unexpectedly
- Severe bruising that occurs easily, even after minor knocks
- Joint hypermobility
Marisa said Ali was taken to doctors several times while growing up, but their mother was made to feel like a "hypochondriac." Ali never underwent genetic testing.
"When we were younger, she'd show me all of these cool, flexible things she could do. I had no idea that it could be a sign of a deadly condition," Marisa said.
"I have realized that just because you look healthy doesn't mean you don't have an underlying condition."
For more information on EDS, The Ehlers-Danlos Society is the leading global organization working toward change for those with EDS and hypermobility spectrum disorders (HSD).
Contact Newsweek editors on this story: Sirena Bergman and Tony Phillips.
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