Ehlers-Danlos Syndrome (EDS) is a rarely diagnosed but surprisingly common genetic disorder that affects connective tissues in the body. While it may not be on everyone’s radar, there are actually quite a lot ofcelebrities who live with this condition. In this article, we will take a closer look at wide range of famous people with hypermobility as well as those with hypermobility due to Ehlers Danlos Syndrome. Hypermobile EDS (hEDS) is by far the most common among these celebrities and the general public, but until recently there was no known gene linked to hEDS. Many of these celebrities also have other conditions that often appear alongside EDS (also known as EDS comorbidities).

Fame impacts how celebrities manage chronic illnesses like Ehlers-Danlos Syndrome (EDS). These public figures use their influence to raise awareness about EDS, advocating for better understanding, research, and treatment. While they face the added challenge of maintaining a public image despite their health struggles, their openness about living with EDS helps to foster empathy and support within the community. By sharing their experiences, celebrities with EDS not only raise awareness but also inspire others, turning their personal challenges into opportunities for advocacy and change.

Many of these celebritites with EDS also have MCAS. Click here if you are interested in learning more about celebrities with Mast Cell Activations Syndrome.

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Famous People with Ehlers Danlos Syndrome

1. Billie Eilish
2. Selma Blair
3. Halsey
4. Sia
5. Lena Dunham
6. Jameela Jamil
7. Cherylee Houston
8. Yvee Oddly
9. Many more are listed below!

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Deep Dive into Celebrities with Ehlers Danlos Syndrome

1 Billie Eilish:

Billie Eilish hardly needs an introduction. Since her breakthrough in 2015 with the release of her debut single, “Ocean Eyes,” Eilish has emerged as a cultural phenomenon. Eilish has been applauded for her candidness in addressing her battles with panic attacks and depression.  In an interview with Vogue, she acknowledged that an injury, was actually one of the reasons she started focusing on music, but it wasn’t until much later that her movement coach, Kristina Cañizares, pointed out that she might be hypermobile. Her hypermobility related injury may even have propelled her to become an even better musician. In reference to that first injury, Eilish stated “I got injured right after we made ‘Ocean Eyes’, so, music kind of replaced dancing.”

In 2023, she publicly disclosed her diagnosis of Hypermobile Type EDS, revealing the physical challenges she’s faced over the years. Eilish expressed her frustration, saying, “A lot of it came from my anger toward my body, and how mad I was at how much pain it’s caused me, and how much I’ve lost because of things that happened to it.” Despite the early indications of hypermobility, Eilish wasn’t diagnosed till much later

Without Hypermobility, Billie Eilish may not have forced to focus so much energy on her music instead of dance. Although hypermobility has limited her ability to exercise in the past, Eilish is not letting Hypermobility stop her anymore. In recent years, Eilish has been very focused on exercising and staying fit.

2 Selma Blair

Actress Selma Blair has been very transparent about her health struggles over the years. She had courageously shared her journey with multiple sclerosis (MS) publically, and now more recently, she has revealed her diagnosis of Ehlers Danlos Syndrome. Studies have shown that patients with Multiple Sclerosis are 10 to 11 times more likely to have Ehlers Danlos Syndrome. Blaire was diagnosed with MS in 2018 after years of misinterpretation of her symptoms, and her battle with this autoimmune disease has been nothing short of inspiring. Despite the challenges, including a rigorous treatment involving chemotherapy and a stem cell transplant, she remains in remission, continuing to face daily struggles with strength and resilience. In 2024, Blair  opened up about living with EDS. Through her New York Times Best Selling memoir “Mean Baby,” social media updates, and public appearances, Blair has become a beacon of awareness, advocating for greater understanding and medical attention towards these complex conditions.

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3 Halsey

Halsey, born Ashley Nicolette Frangipane, has achieved remarkable success in the music industry with her genre-defying sound and emotionally charged lyrics. Her impressive musical accomplishments include multiple chart-topping albums and hit singles, along with critical acclaim for her unique and boundary-pushing approach to pop music. She has achieved all of this despite being diagnosed with mutliple chronic medical conditions.

In 2022, Halsey told Vanity Fair, that she has had autoimmune issues for most of her life, including endometriosis, but since the birth of her child, it’s been much worse. “I didn’t ‘just get sick’ I’ve been sick. For a long time. My sicknesses just have their names now.” Although a diagnosis like EDS can be scary, Halsey actually celebrated it. She told People magazine, “It took me a long time to get to even having a diagnosis so I’m celebrating!”

Her path to diagnosis was not easy. During her diagnostic odyssey, Halsey “was called crazy and anxious and lazy amongst other things.”  She was even hospitalized mulitple times with severe allergic reactions (anaphylaxis), but still nobody was able or willing to help her. She told People that after 8 years and “seeing like 100,000 doctors… she was diagnosed with Ehlers-Danlos syndrome, Sjogren’s syndrome, Mast Cell Activation Syndrome (MCAS), and POTS (postural orthostatic tachycardia syndrome). At that time, Halsey continued to wear a heart monitor, and said that the doctors are still looking for the “root cause of some of these things.”

4 Sia

Sia, the celebrated singer-songwriter known for her powerful vocals and innovative music, disclosed in 2019 that she has been confronting not only the demands of fame but also a debilitating health struggle. In a courageous and candid revelation, Sia shared that she is battling a chronic pain, a neurological conditon, and Ehlers Danlos Syndrome. She announced on twitter to her followers, “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,” She continued saying, “life is f*cking hard. Pain is demoralizing, and you’re not alone.”

In addition to Ehlers Danlos, she has previously mentioned her diagnosis of hyperthyroid disease, alcoholism, neuralgia, and Post Tramatic Stress Disorder (PTSD). PTSD is common in patients with Ehlers Danlos Syndrome, although it is rarely diagnosed.  In fact, she was previously incorrectly diagnosed with Bipolar Disorder. Sia also has cubitle tunnel syndrome and has previously herniated c6-7 c4-5, although she did not say if it was related to her EDS diagnosis.

Sia’s decision to go public with her health challenges is not only a personal revelation but also an important step in raising awareness about these often misunderstood conditions. SIa typically is very private about her personal life, so her disclosure underscores the significance of her compassion and support for individuals navigating similar health battles.

Although some have expressed dismay that Sia’s diagnosis led to news coverage that incorrectly defined EDS as a rare condition, the increased visibility of the disease might help others find their own diagnsosis. At the very lease, Sia’s openness paves the way for more understanding and empathy toward those living with chronic illnesses and chronic pain. Teen Vogue highlighted one fan’s response via twitter by saying, “I’m also an ehlers-danlos warrior. This disease is a beast and your music has carried me through many moments in my fight. Love you forever.”

5 Lena Dunham

Lena Dunham, the actress and writer, has been open about her struggle with Ehlers-Danlos Syndrome (EDS). She was photographed using a cane after leaving a doctor’s appointment in Los Angeles. Rather than concealing her situation, Dunham decided to address it directly and shared the photo on Instagram, explaining that she was going through an EDS flare-up and needed the support of a cane. She acknowledged that using a cane was a significant step for her, as she had resisted it in the past, but she recognized that it allowed her to participate in life more fully. Dunham also humorously mentioned wearing her nightgown outside, emphasizing the importance of comfort during her health struggles.

In addition to EDS, Lena Dunham was previously diagnosed with Endometriosis. To help relieve the endometriosis pain, she underwent a histerectomy to remove her uterus and she also later removed one of her ovaries. After the surgery, she developed a dependency to the anti-anxiety medication, Klonopin. Over the years, many woman who suffer from conditions like EDS have been innapropriately diagnosed with anxiety and prescribed these anti anxiety medications. While it’s not typically prescribed for EDS, MCAS or other comorbidities, it’s worth noting that Klonpin and other Benzodiazepine type medications are a mast cell stabilizer that can reduce the severity of EDS related infllammatory conditions, but the risks of addiction are too high so they are very rarely prescribed.

Despite dealing with sobriety chronic illnesses like EDS and endometriosis. Dunham remains resilient and continues to pursue her dreams and passions while also celebrating her one-year sobriety journey. Her openness about her health challenges has helped raise awareness and provide support to others facing similar issues. Although she was photographed in a bed gown with cane in the morning, Dunham pointed out that just a few hours later that same day she was “in a meeting look tackling the job I love.” “That’s the two-fold life of a woman with chronic illness; we still rock our dreams and goals and passions (and fashions) and we live many lives in one day.”

6 Jameela Jamil

Jameela Jamil, the British actress, and activist, who rose to fame through her roles in The Good place, revealed in 2019 that she lives with Ehlers-Danlos Syndrome (EDS). This revelation came as part of her ongoing efforts to raise awareness about invisible illnesses and the challenges individuals face when living with conditions like EDS. Jamil has been a vocal advocate for body positivity and mental health, using her platform to address societal pressures and promote self-acceptance.

In her announcement, Jameela Jamil shared that she was diagnosed with Ehlers-Danlos Syndrome several years ago, and she expressed the difficulties she has faced due to the condition. EDS can cause a range of symptoms, including joint hypermobility, skin that is prone to bruising and scarring, and chronic pain. Her boyfriend also referenced her swollen joints, dislocations, severe allergic reactions, her constant high fevers which may be indicative of Mast Cell Activation Syndrome (MCAS) By sharing her own experiences with scarring, stretchmarks, and pain, Jamil aims to destigmatize invisible illnesses and encourage open conversations about health and well-being.

She has consistently used her platform to challenge unrealistic beauty standards and to promote self-love and acceptance. She has even been known to tell photo editors to not remove her stretchmarks. She once tweeted, “I *refuse* to have these normal human marks weaponized against me.”  It has even gotten her into a spat with Kim Karadashian. She criticized Kardashian’s make up line and the idea that body make up should be normalized. She celebrated her own natural skin including her eczema. “I have such severe eczema all over that my legs are covered in huge patches of pigment loss from scratching,” she wrote on Twittter. “I have a [ton] of stretch marks, and because I have Ehlers Danlos Syndrome, *every* time I cut, I scar.”, but instead of covering up her natural skin, she celebrates it and refuses to intimidated into hiding it.

Her dedication to advocacy is more than skin deep. Since her diagnosis, Jamil has used her platform to raise awareness about Ehlers Danlos. During an interview with Karina Sturm for Abilify, Jamil said that she is ““I am an advocate first, and everything else last.” During the same interview, Jamil pointed out the difficulty of living with EDS due to lack of recongition. She said “Ehlers-Danlos syndrome is always at the forefront of your mind because it affects every single cell in your body, and so every micro decision you make is in consideration of Ehlers-Danlos syndrome.” Despite her diagnosis and advocacy, people have accused her having Munchausen syndrome, a factitious disorder, which is a mental illness that causes people to fabricate health scares for attention. She told Abilify, “For someone to discard that just because you look ‘Ok,’ according to their own Bible of ableism, it’s very hurtful.”

Jameela Jamil is well known for her EDS related advocacy, and she hasbeen recognized by many patient advocacy groups. Jamil was acknolwedged by Chronic Pain Partners, and she received the Patient Advocate of the Year award from the Ehlers Danlos Society. Her openness about living with EDS serves as an inspiration to others facing similar health challenges, demonstrating that one can thrive and continue advocating for positive change despite the obstacles presented by chronic illnesses.

7 Cherylee Houston

Cherylee Houston, a distinguished British actress born on April 29, 1975, in Morecambe, Lancashire, England, has left an indelible mark in the world of entertainment. She is most recognized for her portrayal of Izzy Armstrong in the iconic soap opera “Coronation Street” and her role as Maz in the BBC Radio 4 comedy series “Tinsel Girl.”

What sets Cherylee apart is not just her talent but her unwavering resilience and advocacy. She is a wheelchair user and has been an outspoken advocate for Ehlers-Danlos Syndrome (EDS) awareness since her diagnosis. Her journey with EDS has not deterred her from pursuing her passion for acting; in fact, she incorporates her experiences into her performances. Beyond her acting career, Cherylee has become a prominent advocate for disability rights and inclusion in the arts. In an interview with Karina Sturm in Abilify Magazine she stated, “In my early teens, I was told I had a growing disability, then arthritis and MS, and then they decided I was making it up… This part was tricky and impacted my identity quite a lot because I’d struggle, but I couldn’t tell people how much I was struggling.” Cherylee Houston’s courageous advocacy has shed light on the challenges faced by individuals with disabilities and continues to inspire change in the entertainment industry and beyond.

8 Yvee Oddly

Yvie Oddly, a contestant on “RuPaul’s Drag Race,” gained attention for discussing her experience with Hypermobility Ehlers Danlos Syndrome (hEDS) on the show. This condition, known for causing hyperflexibility due to a lack of collagen production, has significantly impacted her life. Oddly revealed that she has always experienced pain, initially dismissing it as growing pains, and had to withdraw from extracurricular activities due to its severity. Despite the lack of a cure or specific treatments for hEDS, she manages her condition with glucosamine supplements, physical therapy, and daily maintenance routines like Epsom salt baths and resting.

Oddly’s condition has compelled her to gradually reduce her physically demanding performances. In one clip from “RuPaul’s Drag Race”, she tells the group, “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!”

When speaking with Out Magazine, Oddly expressed a reluctance to discuss her disease initially, fearing it might be perceived as a weakness, but later realized the importance of speaking up about her invisible disability. This openness has connected her with others facing similar challenges, forming a community she refers to as “Zebras”​​​​. She has received a lot of support from people in the Zebra community. One fan posted, “As someone w/ EDS it’s amazing to see you bring so much awareness of this debilitating condition on a worldwide platform – you are an inspiration and a much needed voice our community.”

9 Russell Kane

British comedian and writer who shared his journey with EDS on Loose Women, focusing on joint hypermobility, chronic pain, and its impact on his life. Chronic Pain Partners has highlighted his journey alongside other British actors like Myleene Klass in their article.

10 Saarah Ahmed

Saarah Ahmed, a finalist of Miss Universe Great Britain 2020, passed away after having suffered liver failure and severe colitis at Freeman Hospital in Newcastle. She suffered from an extremely rare form of EDS called Kyposcholiotic Ehlers Danlos Syndrome (Type 6).

11 Daine

Daine is a Filipino-Australian dark pop musician who hails from Australia. In an interview with the Australian Broadcasting Coproration Daine shared that she has been diagnosed with POTS, EDS, and Autism.

12 Gigi Robinson

Gigi Robinson, the Sports Illustrated swimsuit model, openly lives with the trifecta of Ehlers Danlos Syndrome, PoTS, and Mast Cell Activation Syndrome according to her interview with Allure in August 2022.

13 Myleene Klass

Myleene Klass, a prominent celebrity host, initially kept her Ehlers-Danlos Syndrome (EDS) diagnosis private but later opened up about her condition, including her double jointed arms as well as the the unexplainable and excruciating pain for which she found hersefl resorting to high doses of painkillers for relief.

14 Nicola Blackwood

Nicola Claire Blackwood, The Baroness Blackwood of North Oxford, is a British politician who served as a Conservative MP for Oxford West and Abingdon from 2010 until 2017. She has also been known by her married name Nicola Blackwood-Bate since 2016. Baroness Blackwood has a history of significant health challenges. Diagnosed with Myalgic Encephalomyelitis (ME) at 15, she became housebound by the age of 17. After being diagnosed with Ehlers-Danlos Syndrome in 2013 and subsequently with Postural Orthostatic Tachycardia Syndrome (POTS), which causes her chronic migraines, Blackwood has undergone extensive treatment, including 32 injections in the head every 10-12 weeks. Despite these health issues, she has maintained that her conditions have not hindered her duties as a Member of Parliament, even after an incident where she fainted in the House of Lords, which she attributed to POTS but later dismissed as “no big deal.

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15 Daisy LaFarge

Daisy Lafarge, a celebrated poet and author, has been open about her struggles with Ehlers-Danlos Syndrome (EDS). In a recent interview, Lafarge shared her journey with this connective tissue disorder, detailing the impact it has had on her life and work. Known for her poignant and evocative writing, Lafarge has used her platform to raise awareness about EDS, discussing the challenges she faces in managing chronic pain, fatigue, and other symptoms associated with the condition.

Lafarge’s journey with EDS began with subtle signs that were often dismissed or misdiagnosed. It wasn’t until she experienced more severe symptoms, such as joint dislocations and severe fatigue, that she was able to receive a proper diagnosis. Despite these challenges, Lafarge has continued to produce award-winning literature, using her experiences to fuel her creativity and connect with readers on a deeper level.

Her candidness about living with EDS helps shed light on the often misunderstood aspects of the disorder, inspiring others in the chronic illness community to seek proper diagnosis and treatment. Through her work and advocacy, Lafarge highlights the importance of recognizing and supporting those with invisible illnesses, encouraging a more compassionate and informed approach to healthcare.

For more information on Daisy Lafarge and her work, you can read her full interview on The Guardian here.

‍Read full article: https://www.eds.clinic/articles/famous-celebrities-with-hypermobility-and-ehlers-danlos-syndrome-eds