Ehlers-Danlos Syndrome (aka EDS) is a rare connective tissue disorder that usually affects the skin, joints, and blood vessels. Symptoms commonly include hyper-mobile joints that are prone to dislocations, widespread joint and muscle pain, highly elastic skin that tears and bruises easily, etc. Due to it being a rare disease, EDS isn't usually represented in the media other than a lone appearance in the subplot of ane episode of "Grey's Anatomy" or "House M.D.". When a celebrity or public figure speaks out about their experience with Ehlers-Danlos Syndrome it is a huge deal within the community because it often gives others the opportunity to educate those around them about this rare disease. These celebrities are helping bring awareness to Ehlers-Danlos syndrome by being incredibly candid and outspoken about their personal experiences.
Yvie Oddly
GiphyYvie Oddly won the hearts of EDS-ers everywhere on season 11 of "Rupaul's Drag Race" when she revealed that she has EDS while advocating for herself on the show by saying "I'm just a little worried about hitting my knees because they come out of place a lot. It's part of my disease I've got, girl. All of my s-t just pops out!". Yvie Oddly stated that she would not allow her faulty collagen to hold her back in the competition. She kept her word and went on to win the competition that season!
Camille Schrier
www.instagram.com/CamilleSchrier
Camille Schrier was crowned Miss America in December 2019 and is currently making history by fulfilling Miss America's first two-year reign due to the pandemic. Schrier is a graduate of Virginia Tech and is in the doctor of pharmacy program at Virginia Commonwealth University. Her passion for science and medicine stems from her experience living with Ehlers-Danlos Syndrome as she has stated in an interview "It definitely got me interested in science and medicine because there's no treatment for this right now.". Camille Schrier was diagnosed with EDS at the age of 11 alongside her mother who also experienced symptoms similar to those of her daughter. Camille Schrier has been very vocal about her experiences with EDS and is active within the community. She will be making an appearance at the 2020 Virtual Ehlers-Danlos Summer Conference later this month.
Lena Dunham
Giphy"Girls" star and creator Lena Dunham revealed her EDS diagnosis on Instagram after the publication of a paparazzi photo of her utilizing a cane in late 2019. Dunham has talked openly about in the past about her experience with fibromyalgia and endometriosis.
Jameela Jamil
GiphyMany have wondered whether or not actress and activist Jameela Jamil is a fellow zebra since October 2018 when she began posting photos on Instagram that highlighted her symptoms. Jamil has posted pictures of her hyper-extended elbows, stretchy skin, and odd contortion-like poses. She confirmed our suspicions in February of 2019 when someone commented on her photo asking if she has Ehlers-Danlos Syndrome to which she responded "indeed". Since then Jamil has been very outspoken about her experiences living with a rare chronic illness.
Sia
GiphyAustralian singer-songwriter Sia announced that she was living with Ehlers-Danlos Syndrome in a tweet last fall that read "Hey, I'm suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going. Life is f-ing hard. Pain is demoralizing, and you're not alone.".
