- 4. Allysa Seely
- 5. Cherylee Houston
- 6. Madeline Dyer
- 7. Russell Kane
- 8. Mikaila Delgado
- 9. Enedina Stanger
- 10. Julian Van Horne
- 11. Vanessa Wallace
- 12. Sara Geurts
- Sia reveals she has Ehlers-Danlos syndrome, is suffering from chronic pain
- Lena Dunham talks about HBO’s ‘Camping’ and her health
- What is Ehlers-Danlos syndrome?
- What are the symptoms?
- What is the treatment?
- Jameela Jamil Just Revealed She Has Ehlers–Danlos Syndrome
4. Allysa Seely
View photos Allysa Seely Team USAMore
via Alyssa Seely’s Facebook Page
Alyssa Seely is an American para-triathlete who won a gold medal in the PT2 women’s triathlon at the 2016 Summer Paralympics. After being diagnosed with Chiari II malformation, basilar invagination and Ehlers-Danlos syndrome in 2010, Seely went through some major medical complications that included having her left leg amputated.
Seely was determined to keep competing despite her health challenges. “People of all different abilities can compete at the highest level of sport,” she wrote for ESPNW. “You don’t need to have two legs or two arms. I want to help promote that.”
5. Cherylee Houston
View photos Cherylee Houston long hair wheel chair looking at cameraMore
via Cherylee Houston’s Twitter page
Cherylee Houston is an actress known for her work on the television series, “Coronation Street.” She was 23-years-old when she was officially diagnosed with Ehlers-Danlos syndrome. She began using a wheelchair after her diagnosis.
“I am continually in pain,” Houston said on “The Agony and the Ecstasy,” a BBC Radio 4 show, in regards to her EDS. “Yet there’s something about acting that enables me to break through my pain levels.”
6. Madeline Dyer
View photos Madeline Dyer Headshot Black and WhiteMore
via Madeline Dyer’s professional website
Madeline Dyer is a fantasy and science-fiction writer based in the U.K. Dyer posted a thread on her Twitter page about living with Ehlers-Danlos syndrome in Aug. 2018 after a grocery store clerk did not believe her chronic illness was real.
When discussing what happened with The Mighty, Dyer said, “Several times, I’ve heard myself referred to as ‘the sick girl,’ but there is so much more to me than that — I’m a writer, artist, reader, with hopes and dreams. I just happen to have chronic illnesses as well…”
7. Russell Kane
View photos Russel Kane ComedianMore
via Russell Kane’s Facebook page
Russell Kane is a writer, actor and comedian who is known around the U.K. He goes on tour with his act and has been on reality television shows including “I’m a Celebrity, Get Me Out of Here! NOW!”
Kane wrote in a Twitter post that he had to prove his EDS diagnosis by being acrobatic in front of people because no one believed him. “The staff at @StuartPhillips seemed unconvinced I have Ehlers-Danlos syndrome,” he said in his tweet. “I did a cartwheel and showed off my flat feet and everything.”
8. Mikaila Delgado
View photos Mikaila Delgado selfieMore
via Mikaila Delgado’s Instagram page
Mikaila Delgado is the lead singer of Yours Truly, a pop-punk band based out of Australia. The band has a song based on Delgado’s experience with EDS called “I Can’t Feel.”
“I’m so proud of this song; I wrote it at a time where I felt helpless about my health and that I’d never be able to get on with my life how I wanted to,” she said on her Instagram. “I’m really hoping that anyone who is going through something tough in their lives feels something from it.”
9. Enedina Stanger
View photos Enedina Stanger American Ninja WarriorMore
via Enedina Stanger’s Facebook page
Enedina Stanger competed on “American Ninja Warrior” in the summer of 2018. Her husband, Michael, had competed on the show in 2015 and 2017. Stanger used a wheelchair when she was on the show supporting her husband the first time. Stanger said she was able to stop using her wheelchair and compete due to a combination of diet, exercise and cannabis.
“Ehlers-Danlos Syndrome and ‘American Ninja Warrior’ have provided me the opportunity to see the lord take the weakest things and make them strong,” Stanger said in a promo video for the show. Although she didn’t make it through the first obstacle course, her story resonated with fans everywhere.
10. Julian Van Horne
View photos Julian Van Horne With Service Dog Equal ShirtMore
via Julian Van Horne’s Instagram page
Julian Van Horne is a blogger who lives with Ehlers-Danlos syndrome. He is currently starting a business that creates disability-inclusive products and is an Instagram influencer with almost 12,000 followers.
In an Instagram post, Van Horne discussed what feels like to live with EDS. “One day I’m fine and the next day I’m not,” he said. “I’ve gone through periods of time where I can’t walk at all. I’ve gone through times where I couldn’t move the entire left side of my body, even my face. I’ve had to relearn how to walk multiple times.”
11. Vanessa Wallace
View photos Vanessa Wallace smilingMore
via British Athletics
Vanessa Wallace is a para-athlete from England who regularly competes in shot put. She won gold at the World Para Athletics European Championship in 2018.
After working hard to win in 2018, she said she couldn’t even believe it. “I don’t even know what words can sum this up,” she said. “It’s amazing, that is the best way to put it.”
12. Sara Geurts
View photos sara geurts dress smilingMore
via Sara Geurts’s Instagram page
Sara Geurts is a model and Instagram influencer who lives with Ehlers-Danlos syndrome.
“My Ehlers Danlos Syndrome these weeks have been a lot,” she wrote in an Instagram post to her partner. “Three doctors visits, two misdiagnosis and six prescriptions (which are all new and five of which I’m currently taking). It’s a lot for anyone… and you’ve been with me now, and through it all and I just wanted to say, thank you and that I love you.”
If you are struggling to find others who understand EDS and know what you are going through, join The Mighty’s Ehlers-Danlos community and check out the stories below:
- What I Wish You Knew: The Side of EDS No One Sees
- Dear Ehlers-Danlos Syndrome, I’m Angry With You Today
- What Google Won’t Tell You When You Search for Ehlers-Danlos Syndrome
- My Checklist for Facing Moments of Crisis With EDS
Read more stories like this on The Mighty:
Sia reveals she has Ehlers-Danlos syndrome, is suffering from chronic pain
Sia is opening up about her health.
The singer, 43, took to Twitter Friday to reveal she is suffering from chronic pain. She also revealed she has Ehlers-Danlos syndrome.
“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 wrote. “Life is (expletive) hard. Pain is demoralizing, and you’re not alone.”
According to The Mayo Clinic, Ehlers-Danlos syndrome is “a group of inherited disorders that affect your connective tissues,” including your skin, joints and blood vessel walls. People with the syndrome usually have “overly flexible joints and stretchy, fragile skin,” the site states.
Sia’s rep declined further comment.
Sia’s followers replied to the singer’s announcement with encouragement, including fellow singer Mary Lambert.
“You inspire so many of us, @Sia. Take care of your body & heart, on your terms. We love you right back,” she tweeted.
Sia, who is from Australia, is best known for her hits “Chandelier,” “Cheap Thrills” and “Elastic Heart.”
More:Sia claps back after Taylor Swift fans accuse her of donning blackface
More:Dolly Parton and Sia combine powers on the ‘Dumplin” track ‘Here I Am’
NICOLA Blackwood has revealed she has been battling with a genetic condition for years but believes it has not affected her performance as a politician.
The Conservative prospective parliamentary candidate for Oxford West & Abingdon spoke to the Oxford Mail yesterday for the first time about being diagnosed with a genetic joint mobility syndrome called EhlersDanlos (EDS) in 2013.
The condition affects tissue in skin, ligaments, blood vessels and internal organs and bones. It is known as an invisible illness because the symptoms are often not physically visible and about 57 per cent of patients wait more than 10 years for a diagnosis.
As a result of her EDS, she has since been diagnosed with postural tachycardia syndrome (PoTS), an an abnormality of the autonomic nervous system affecting blood pressure and heart rate…….Miss Blackwood said: “It’s been a long, rocky road to diagnosis but the NHS has been fantastic in helping me get on top of this.
“I’m lucky I don’t face life-threatening complications like some EDS patients; in fact I’ve found that it’s been the simplest things like eating a high salt diet and pilates that have made the biggest difference. “Now I can go into the election without any uncertainty, in control of my health, and trust that my constituents will see from my record how much I love representing them and my home constituency, and let me finish the job I’ve started.”
As a child, Miss Blackwood had asthma and was diagnosed with ME at the age of 15, becoming housebound by the time she was 17. It interrupted her A-Levels and she had to be home-schooled. But having been trained as a classical singer at Trinity College of Music from the age of 14, she went on to gain a first in music at St Anne’s College and an M.Phil in musicology from Emmanuel College, Cambridge.
She said she was able to get on top of the ME but in 2011 her health began deteriorating and in September 2013 she was diagnosed with EDS. Despite receiving treatment, Miss Blackwood said she still had problems with her health and it was not until last August that she was diagnosed with the secondary condition PoTS.
She said she has altered her lifestyle to cope with the conditions including changes to her diet, doing pilates and physiotherapy, as well as taking medication. She has to have 32 injections in her head every 10 to 12 weeks to help her migraines.
But she said it has not affected her job as an MP and added: “Even while I have been going through the process of getting diagnosed and learning how to manage the condition, I have been a marginal seat MP representing my constituents here in Oxford including major campaigns for A34 funding and flood defences…so I am even more confident now I have it under control.”
Recently, Ehlers-Danlos syndrome (EDS) made news headlines. That doesn’t happen often.
Actress Lena Dunham announced that she has EDS in response to questions about a photo of her using a mobility aid. While I’d heard her name, I knew little about the actress, but I want to give her some serious kudos for being open while speaking out about having EDS.
Like most other rare diseases, few people know about EDS outside of the affected communities. It’s still commonplace for me to be the only patient with EDS that a doctor has ever seen. They’ve learned about the disorder in medical school or read about it in journal articles, but have never seen its manifestation in an actual person.
When I encounter a medical professional who knows little about my condition, I look upon our meeting as a learning opportunity. I am patient when allowing them to examine me. I reveal all of my common, less obvious EDS symptoms: flat feet, high-arched palate, soft and stretchy skin, and joints that can hyperextend. I don’t mind showing them these features. And if I’m at a clinic or hospital where interns and residents are treating me, the attending doctor will often ask if they can see me, too.
I always say yes. Why not spread awareness? The prevalence of EDS is estimated at 1 in 5,000 people, so it makes sense that few doctors see cases like mine. Perhaps if I allow them to examine me, someday in the future, they might recognize the same symptoms in another patient and set them on a path toward a diagnosis. Though awareness of EDS has increased, underdiagnosis remains a significant problem.
While doing research for this column, I also discovered that Australian singer-songwriter Sia and actress Jameela Jamil recently disclosed their EDS diagnoses as well. Thanks to their openness, EDS has been described in multiple articles and reports by news outlets worldwide.
I was undiagnosed until 22, despite my dad, who is a doctor, and several of his medical colleagues working to solve the cause of my mysterious symptoms since I was about 10. I believe that greater awareness is hugely important, particularly for people like me who have no family history of the disorder.
I hope that someone will read one of these articles and think, “Hey, that sounds a lot like me. Maybe I should ask about it at my next doctor’s appointment.” If a celebrity talking about their disease leads to someone finally getting a diagnosis and help with issues such as pain management, that’s a win in my book.
That’s why I write this weekly column: to increase awareness and let those of us who rarely meet another person with our condition know that we’re fighting the same battle.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
Lena Dunham wants fans to know there’s a reason why she sometimes has to rely on a cane: The “Girls” star says she’s living with Ehlers-Danlos syndrome, a rare condition that can cause joint pain and other problems.
Dunham took to Instagram over the weekend to share a photo of her using the walking aid while wearing a nightgown outdoors. The actress wrote that she could have chosen to be embarrassed by the “paparazzi pics” or pretended she was sporting an early Halloween costume, but neither was true.
Lena Dunham refused to be embarrassed by this photo. Living with a chronic illness means “we live many lives in one day,” she wrote on Instagram.theimagedirect.com
“This is what life is like when I’m struggling most with chronic illness. An Ehler-Danlos syndrome flare means that I need support from more than just my friends,” Dunham, who has also been open about her struggle with endometriosis and eating disorders, explained in the caption.
“So thank you, sweet cane! For years, I resisted doing anything that would make my physical situation easier, insisting that a cane would ‘make things weird.’ But it’s so much less weird to actually be able to participate than to stay in bed all day.”
Dunham wore the nightgown because she just needed to walk a few feet to a car to go to a doctor’s appointment, she added. An hour later, she wore a different outfit for a meeting, describing the contrasts as “the two-fold life of a woman with chronic illness.”
Trending stories,celebrity news and all the best of TODAY.
Lena Dunham talks about HBO’s ‘Camping’ and her health
Oct. 8, 201805:29
Last month, singer Sia revealed she suffers from chronic pain due to the same syndrome.
What is Ehlers-Danlos syndrome?
It’s actually a group of 13 related disorders caused by different genetic defects in collagen, an essential building block, according to the National Organization for Rare Disorders.
EDS weakens the body’s connective tissues — which normally provide strength and flexibility — either because the collagen isn’t as strong as it should be or there’s not enough of it in the skin, muscles, skeleton and blood vessels.
The inherited disorders affect about one in 5,000 people, the National Institutes of Health noted. They’re diagnosed with genetic testing and a physical exam.
What are the symptoms?
They depend on the type of EDS and can range from loose joints to life-threatening complications, such as bleeding and the possibility of organ and vessel rupture. The Ehlers-Danlos Society listed these possible warning signs:
- loose, overly flexible or unstable joints
- joint pain
- soft, stretchy, fragile skin that tears or bruises easily
- slow and poor wound healing
- severe scarring
- debilitating musculoskeletal pain
- poor muscle tone
What is the treatment?
There is no cure, so the treatment involves managing symptoms. About 90% of EDS patients suffer from chronic pain, which may require medication, physical therapy to prevent injuries, low-resistance exercise and the support of devices like braces, canes, wheelchairs and scooters.
If patients have loose, hypermobile joints that can easily dislocate, the focus is avoiding situations that might cause it to happen, like contact sports or lifting heavy objects. Calcium and vitamin D can help maximize bone density.
Doctors may also recommend patients use sunscreen and mild soaps to protect their fragile skin, the Cleveland Clinic noted.
Jameela Jamil Just Revealed She Has Ehlers–Danlos Syndrome
Photo: Ian Gavan / Getty Images
Jameela Jamil, known for both her role in The Good Place and for calling out celebs for unhealthy endorsements, recently shared a video of herself stretching her cheeks on Instagram with the caption: “I’m fine.” While it seemed like she was just goofing around at first, a fan commented on the video asking if she had Ehlers–Danlos syndrome (EDS), a rare connective tissue disorder that causes extra-elastic skin and overly flexible joints. Very subtly, she responded, “Indeed,” confirming her diagnosis.
This seems to be the first time that Jamil has said anything about having EDS, but she has previously drawn attention to her symptoms. Last year, someone asked “what the fork” was happening in a photo of her hyperextending her elbow, to which she responded: “My arm is being extremely sexy!” (Related: Jameela Jamil Wants You to Know That She’s More Than Just a Hater for Celebrity Diet Endorsements)
So, what exactly is EDS, you might ask? Turns out, it’s a term used to describe a group of connective tissue disorders that all have their own unique symptoms, according to the National Institutes of Health. To be exact, there are 13 known subtypes of the disorder and they all affect areas of your body that have connective tissue-your skin, muscles, tendons, ligaments, blood vessels, and organs.
While some people might experience mild loose skin that isn’t a major cause for concern (which seems to be the case for Jamil, at least based on her IG caption), others can have more visually apparent symptoms like model Sara Geurts. Her EDS is severe enough that it causes her skin to appear fragile and wrinkled-and she’s chosen to use photos of her skin to raise awareness about the rare condition. EDS can also manifest in ways that are more complicated, and that can lead to life-threatening complications, like unpredictable tearing of organs like the heart, blood vessels, and intestines-and the uterus during pregnancy.
Unfortunately, there’s currently no cure for EDS. Treatment, which usually involves physical therapy and high-dose painkillers, is often used to simply relieve symptoms to prevent further complications, according to Mayo Clinic.
As of right now, it’s unclear what subtype of EDS Jamil might have, but at the very least she deals with both loose skin and very flexible joints. Given her candidness on social media, it’s likely Jamil will share more details about her condition in the future.
Exploring the world of hypermobile celebs.
Corrie’s Cheryl Houston is probably one of the most famous people who suffers from Hypermobility Ehlers Danlos Syndrome. Cherylee has done fantastic work raising awareness about the condition through EDS UK. She is Coronation Street’s first full time disabled actress.
Mandatory Credit: Photo by David Fisher/REX (3525294ld) Cherylee Houston National Television Awards, The O2, London, Britain – 22 Jan 2014
Gary ‘Stretch’ Turner can stretch the skin of his stomach to a distended length of 15.8cm or 6.25in due to Ehlers-Danlos Syndrome.
He is even in the new book of Guinness World Records!
guinness world records best bodies Garry Turner skin guinnessworldrecords.com https://www.facebook.com/GuinnessWorldRecords/timeline
UK Singer Myleene often shows off her hyper mobile elbows. She can even play the piano backwards!
Various articles state that Kelly suffers from hypermobile hips that frequently pop in and out. Reports even suggest that the fashionista’s hips pop out unexpectedly causing her to fall over. During her stint in Dancing with the Stars she said: ”I’m double-jointed everywhere, I think that’s why I’m so accident prone. Tight jeans and high heels equals one of my hips popping out and my face on the floor. As a result of this curse, I can fall perfectly. I turn it into a dance move.” (Xposé.ie)
Ouch! By the sounds of it, Kelly suffers from a hypermobility syndrome.
The pint sized Columbian singer isn’t shy about showing off her tricks. She can pull her legs over her head which “really freaks people out”.
A Few Honourable Mentions
It is believed although not proven that historical figures such as Abraham Lincoln and Anne Frank suffered from connective tissue disorder,Marfan Syndrome.
Abraham Lincoln was 6″4. The president’s lanky build, his long, thin face, and his enormous hands and feet, sparked the notion that Lincoln might have had Marfan Syndrome. Geneticists and historians have debated this idea since it was first proposed in the early 1960s.
Anne Frank, the famous German diarist who hid in her attic during World War II is believed to have suffered from Ehlers Danlos or some other Connective Tissue Disorder such as Marfan Syndrome. When talking about P.E in her diary, she says:
I’m not allowed to take part because my shoulders and hips tend to get dislocated.
Anne’s facial features also suggested she may have suffered from EDS. Her large eyes, thin nose and lips are common features in EDS sufferers.
There is a wide belief amongst medical professionals that both Elizabeth Taylor and The King of Pop, Michael Jackson both had EDS.
Note how bendy the actress’ elbows are.
Dr Diana Driscoll explains in the video below the reasons she believes Liz Taylor had EDS.
Interestingly, Michael and Elizabeth were friends. It is known that Michael suffered from chronic pain and insomnia, both of which are common symptoms of EDS. In addition to his hypermobility, it is possible to assume the late singer battled with the syndrome. Watch below from 16:40. Professor Rodney Grahame, one of world’s leading expert explains why he believes Jackson had Ehlers Danlos Syndrome.
While we have mentioned syndromes such as Marfan and EDS, it is important to note that 10% of the population are hypermobile and will not suffer from pain or complications. Many people with hypermobility live perfectly normal lives, some even use their bendiness to their advantage by taking part in Ballet and Gymnastics.
Have you spotted any bendy celebs? Hit comment and let me know!
Until next time,