Jameela Jamil, British actor and presenter, pulling her cheeks back and bending her arms in the wrong direction share on video I posted on social media that I have a rare genetic condition called Ehlers-Danlos Syndrome (EDS) explains her hypermobility and stretchy skin, among a long list of other symptoms.
EDS, caused by mutations in specific genes, consists of 13 different but similar disorders that weaken connective tissues throughout the body that provide structural support and protection to organs and other tissues. The most common symptoms common to her various types of EDS include very flexible or unstable joints, chronic widespread pain, and stretchy skin that cuts and bruises easily. I have.
Jamil, 36, most recent TV appearance She-Hulk: Lawyer The series, which premiered on Disney+ this year, said she was diagnosed with the condition at the age of nine and was able to avoid many of the things that make her sicker as she gets older, like drinking, smoking and other things. drug.
She apologized on Instagram, tick tock Followers, who didn’t talk much about her EDS, blamed the internet for consistently making fun of her health problems. (Jamil has spoken out about her EDS diagnosis in the past and won the Ehlers-Danlos Society Patient Advocate of the Year Award 2019)
“They are a bunch of ignorant bastards who do not have a hundredth of our power. They cannot imagine us surviving, so they choose to gaslight us on everything instead.” “I didn’t speak to people who were interested in this very important subject because I’m healthy and fortunate enough to not have a soul,” Jamil wrote in an Instagram caption. because there are so many people.”
Her social media posts were filled with comments thanking Jamil for her efforts to continue raising awareness about a condition that is all too often misdiagnosed and misunderstood.
“Let’s raise awareness together on this issue and save some lives!” Jamil wrote.
What You Need to Know About Ehlers-Danlos Syndrome
According to the Ehlers-Danlos Society, Jamil said he has hypermobile EDS (hEDS). Still, it is considered a rare condition that is likely underestimated due to frequent misdiagnosis.
Classic EDS and vascular EDS are even rarer, occurring in 1 in 20,000 to 40,000 and 1 in 100,000 to 200,000 people, respectively. All other types of her EDS are considered “ultra-rare”, affecting less than 1 in 1 million of her. A rarer and more serious type of condition can be life-threatening.
EDS can be inherited from a parent, but some people may be the first to develop EDS in their family due to mutations in the gene.
Each type of EDS is associated with different symptoms, and people with the same type can experience radically different things. For example, Jamil said she has to carry an EpiPen everywhere she goes because she can develop random allergies to her favorite foods “for no reason.”
Genetic testing can help diagnose some subtypes, but no test can confirm whether someone specifically has hEDS.However, some common symptoms that are part of the diagnostic criteria include joint hypermobility, fatigue, dizziness and increased heart rate after standing, bladder control problems, pain, and digestive problems. , and skin prone to bruising. The condition can also make people’s blood vessels, abdominal organs, eyes, bones Very fragile and prone to injury.
Often sleep disorders, mast cell disease, pot (postural orthostatic tachycardia syndrome) with EDS.
Experts say if you have some of these symptoms, as long as they don’t interfere with your daily activities, you shouldn’t worry. For example, joint hypermobility is fairly common, affecting 1 in 30 people.
There is no condition-specific treatment, as symptoms vary widely between different types of EDS. Instead, it is individualized and treated in a variety of ways, including physical therapy to strengthen joints and manage pain, occupational therapy to manage daily activities, and mental health counseling to address the challenges of chronic illness. .
In general, people with EDS should be careful about activities that tax the body or increase the risk of injury, depending on the type of EDS. You may need to avoid contact sports or wear additional protective equipment to protect your joints when performing certain activities.
Getting a diagnosis can be difficult, but Jamil urged seeking help from others (if possible, especially from a rheumatologist) if you have reason to believe you have EDS. . Said. “We look healthy, so people either don’t believe us or accuse us of having Munchhausen.” Former name for a disorder of deception, a mental condition that involves making oneself sick to gain.)
“Do your research and see if you have any symptoms. If you have joint problems or suffer from accidents all the time, find out before it’s too late,” Jamil said in the video. I love you, I’m with you. Go get tested.”