Sisters flexibility pale skin linked to rare condition
Marisa says her sister Alana’s flexibility, translucent skin and easy bruising were later considered possible signs of vascular Ehlers-Danlos syndrome. Alana died suddenly in 2024, aged 26, but her family cannot confirm the suspected diagnosis because she never had genetic testing.
Marisa’s sister Alana had unusual flexibility and pale, translucent skin before she died suddenly in Paris in 2024, aged 26; doctors later said she may have had vascular Ehlers-Danlos syndrome. The sisters flexibility pale skin story has drawn attention to a rare condition that can weaken blood vessels and organs.
Alana, whom her family called Ali, was studying art in Paris. Marisa and their mother were visiting her and staying at a hotel near her flat when Ali collapsed at home.
Marisa said the family had seen Ali that day. That night, Ali was speaking with their mother by phone when the line suddenly went quiet. Marisa and her mother rushed to the flat, but Ali did not answer the door; French emergency services entered and found her collapsed.
“Her death was extremely sudden,” Marisa recalled in a TikTok video. She also told Newsweek: “She appeared to be healthy. Her death was such a shock.”
What signs did Marisa notice?
Marisa recalled that Ali could bend and move in ways her sister could not. She also had translucent skin, bruised easily and complained while growing up of aches, pains and fatigue.
“I had no idea that it could be a sign of a deadly condition,” Marisa said of Ali’s flexibility. The family also described her as having delicate facial features and thin lips.
After the death, French doctors issued an autopsy. Marisa brought it home to be translated and then asked several Florida medics to review it. They said Ali may have had vascular Ehlers-Danlos syndrome, or vEDS, but the family cannot establish that she had the condition.
Ali never underwent genetic testing. Her family believes an abdominal aortic rupture caused her death. “We believe she suffered an abdominal aortic rupture, and it likely killed her instantly,” Marisa said.
Why can vascular Ehlers-Danlos syndrome be dangerous?
Ehlers-Danlos syndrome is a group of genetic disorders affecting connective tissue, which supports joints, skin and organs. The source describes 13 types. People with the condition can have unusually mobile joints and skin that stretches or bruises easily.
Vascular Ehlers-Danlos syndrome is a rare type that affects blood vessels and internal organs. Fragile vessels can bulge or tear, causing life-threatening internal bleeding; the condition can also raise the risk of organs tearing or a partial lung collapse.
The figures cited in the report put Ehlers-Danlos syndrome at between one in 5,000 people. Vascular Ehlers-Danlos is rarer still, at one case per 200,000 to 250,000 people.
That risk gives the family’s account a practical medical consequence: signs that may look like flexibility or easy bruising can also be part of an inherited connective-tissue disorder. Marisa said her mother had taken Ali to doctors several times while she was growing up, but was made to feel like a “hypochondriac.”
An abdominal aortic rupture involves the aorta, the artery carrying blood from the heart to the abdomen. A swelling in the artery, known as an aneurysm, may cause no symptoms before it bursts, the report says. Smoking, high blood pressure and high cholesterol can raise aneurysm risk, as can some inherited connective-tissue disorders that weaken blood vessel walls.
Marisa has since undergone genetic testing. Her sister’s suspected diagnosis, however, remains unconfirmed.
