While pulling her cheeks wide and bending her arm in what looks like the wrong direction, British actor and presenter Jameela Jamil shared in a video posted on social media that she has a rare genetic condition called Ehlers-Danlos syndrome (EDS), which explains her hypermobility and stretchy skin, among a long list of other symptoms.
Caused by mutations in specific genes, EDS consists of 13 distinct yet similar disorders that weaken the connective tissues throughout the body that provide structural support and protection to organs and other tissues. Some of the most common symptoms shared among the different types of EDS include extra-flexible or unstable joints, chronic widespread pain, and stretchy skin that cuts or bruises easily.
Jamil, 36, whose most recent TV stint was on the She-Hulk: Attorney at Law series that premiered on Disney+ this year, said she was diagnosed with the condition at 9 years old, which allowed her to avoid many of the things that would have made her much sicker as she aged, such as drinking alcohol, smoking, and doing other drugs.
She apologized to her Instagram and TikTok followers for not talking about her EDS more often, blaming the internet for consistently making fun of her health problems, which Jamil said made her “suicidal for a while.”
“They are just a bunch of ignorant arseholes who haven’t a hundredth of our strength, they can’t imagine surviving what we survive, so they choose to gaslight us about it all instead,” Jamil wrote in an Instagram caption. “I’m done not talking to the people who MATTER about this hugely important subject because a bunch of people lucky to have good health, have no souls.”
Her social media posts were filled with commenters appreciative for Jamil’s effort to raise awareness about the condition that’s too often misdiagnosed and misunderstood.
“Let’s raise awareness on this subject together, and save some motherfucking lives!” Jamil wrote.
What to know about Ehlers-Danlos syndrome
Jamil said she has hypermobile EDS (hEDS), the most common type of EDS comprising about 90% of cases and affecting at least 1 in 3,100–5,000 people, according to the Ehlers-Danlos Society. Still, it’s considered a rare condition that’s likely underestimated because of frequent misdiagnoses.
Classical EDS and vascular EDS are even rarer, affecting about 1 in 20,000–40,000 people and 1 in 100,000–200,000 people, respectively. All other types of EDS are considered “ultra-rare,” impacting less than 1 in 1 million people. The more rare and severe types of the condition can be life-threatening.
EDS can be inherited from a parent, but some can also be the first person in their family to develop the condition due to a mutation in their genes.
Each type of EDS is associated with different symptoms, and even within the same type, people can have radically different experiences. Jamil, for example, said she sometimes develops random allergies to her favorite foods “for no reason,” so she has to carry an EpiPen everywhere she goes.
Genetic testing can help diagnose some subtypes, but no tests exist that can confirm whether someone has hEDS specifically. However, some common symptoms that are part of the diagnostic criteria include: joint hypermobility, fatigue, dizziness and increased heart rate after standing, bladder control issues, pain, digestive problems, and skin that bruises easily. The condition can also make people’s blood vessels, abdominal organs, eyes, and bones extremely fragile and prone to injury.
Oftentimes other medical conditions like sleep disorders, mast cell diseases, and POTS (postural orthostatic tachycardia syndrome) accompany EDS.
If you have some of these symptoms, experts say there’s no need to worry as long as they aren’t disrupting your daily life. Joint hypermobility, for example, is pretty common and affects about 1 in 30 people.
Because symptoms vary widely among the different types of EDS, there aren’t any condition-specific treatments. Instead, symptoms are treated individually via a variety of routes like physical therapy to strengthen joints and manage pain, occupational therapy to manage daily activities, and mental health counseling to cope with the difficulties of chronic illness.
Generally, people with EDS need to watch out for activities that can strain their bodies or increase their risk of injury, which depends on the type of EDS they have. Some people, for example, may need to avoid heavy lifting and contact sports and should wear additional protective gear when doing certain activities to protect their joints.
As hard as it is to receive a diagnosis, Jamil strongly encouraged others to seek help (specifically from a rheumatologist, if possible) if they have reason to believe they have EDS, “especially because the people who have it look really well,” she said. “We look healthy so people either don’t believe us… or they accuse us of having Munchausen.” (Munchausen syndrome is a mental condition that causes people to repeatedly seek medical attention for an illness they don’t have.)
“Look it up, see if you have the symptoms. If you’re struggling with your joints, if you’re struggling with accidents all the time, please find out before it’s too late,” Jamil said in her video. “I love you, I’m with you. Go get checked.”