Ehlers-Danlos Society Honors British Actor Jameela Jamil With Patient Advocate Award

The Ehlers-Danlos Society presented Jameela Jamil, a British actor and activist, with the Patient Advocate of the Year award at its 2019 Global Learning Conference, held recently in Nashville, Tenn.

After accepting the honor through a video link, “The Good Place” television series star thanked the society for distinguishing her with the award — and for welcoming her into the Ehlers-Danlos syndrome (EDS) community.

“I am sorry it took me so long to speak publicly about my condition. 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,” Jamil said in her acceptance video, according to a press release.

“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,” Jamil added.

The Ehler-Danlos syndromes are a group of 13 genetic diseases, each of which interfere with the production of the protein collagen. That protein is essential for maintaining the strength and structure of connective tissues — tissue that connects or separates other tissues or organs in the body. People with EDS experience a range of complex problems across multiple organ systems.

The physical symptoms common to all types of EDS include having hypermobile joints, or joints that extend beyond normal range of motion, and skin hyperextensibility — skin that can stretch beyond the normal range. Another typical symptom is tissue fragility, which causes easy bruising and poor healing of wounds.

There is no cure for EDS. Treatment is aimed at managing disease symptoms.

Earlier this year, Jamil acknowledged on her Instagram account that she has EDS. Now, she wants to help others with the disease.

“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,” Jamil said.

The Ehlers-Danlos Society, whose goal is to help improve the lives of EDS patients, said it is appreciative of Jamil’s efforts to help raise awareness about the disease.