On Aug. 1, Jameela Jamil apologized for waiting so long to reveal her Ehlers-Danlos syndrome diagnosis, Her reasons for not coming forward right away might be relatable if you’ve ever felt judged because of your chronic illness.
The Ehlers-Danlos Society presented “The Good Place” actress with its Patient Advocate of the Year award during its Global Learning Conference in Nashville, Tennessee. Jamil accepted her award remotely via video. She highlighted how little awareness there is in the medical community about Ehlers-Danlos syndrome and why patient advocacy is so important.
“I am sorry it took me so long to speak publicly about my condition,” Jamil said in her acceptance speech, adding:
I think I was afraid of being discriminated against, and I think I feel, I felt, discouraged by how little information there is about it publicly, and still how little research is being done around this condition. It’s terrifying how many doctors still haven’t heard of it, and it’s been around for a very long time. So many people have it, and so many more people than we realize as they don’t know the symptoms, because the symptoms aren’t being discussed on mass. I hope to do my part to raise awareness and encourage more research, and more science, around discovering how we can support people of this community.
Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder that can cause symptoms like overly flexible joints, joint dislocations, stretchy skin that bruises easily and chronic pain. There are 13 subtypes of EDS, and while some are very rare, hypermobile Ehlers-Danlos syndrome (hEDS) occurs more frequently, in an estimated 1 out of every 3,000-5,000 people.
Jamil confirmed she was diagnosed with hEDS in an Instagram post in February and has since shared other snapshots of what it’s like to live with EDS and hypermobility. After receiving the patient advocacy award from the Ehlers-Danlos Society, Jamil posted a photo on Instagram with the award and a caption about her diagnosis.
“Proud to be an @ehlers.danlos advocate of the year,” Jamil wrote. “I got diagnosed at 9 years old and there is still so little information 20 years later about this condition that affects so many of us in so many ways. Well done for all you do to cope with this condition. I admire you so very much.”