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EDS (Ehlers Danlos Syndrome) Stories

“I’m Lindsey and I’m from London, England. I live with multiple invisible chronic illnesses and have done for most of my life, but look perfectly healthy. The main ones are Ehlers Danlos Syndrome (suspected hyper mobile type), Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome and Aquagenic Urticaria. EDS (Ehlers danlos syndrome) causes dislocations and subluxations around 4/5 times a day which can be extremely painful. I have gastrointestinal issues, heart issues, endocrine system issues and much more. EDS is very disabling for me and is suspecting to be the cause of all my other conditions. PoTS causes me to faint, blackout, have chest pain, tachycardia, extreme fatigue, blood pooling, brain fog and much more. This condition really brings me to tears. PoTS tends to drag me down the most out of all of my conditions. Lastly... I am allergic to water. My story about my allergy went viral online and as expected, I received a lot of hate about being a faker. When I come in contact with water I break out in nasty hives (pictures can be found on my Instagram @chronically.linds). I am allergic to my tears, sweat, rain and general water. Reactions can be swollen tongue, lips, sore stomach and regurgitation. This condition is caused by MCAS (mast cell activation syndrome) which is then caused by EDS. MCAS can cause allergic reactions at any point in time whether it is flushing in the face or full anaphylaxis. I wear this necklace for EDS as there’s no where near enough research. I also am wearing it to raise awareness for Aquagenic Urticaria as there is pretty much no known knowledge of this condition. Thank you so much A.W.A.R.E for letting me share my story.” @chronically.linds

 

“I got my A.W.A.R.E. necklace because I was diagnosed with Ehlers Danlos Syndrome (EDS) when I was pregnant with my third child a little over 5 years ago. Ehlers Danlos Syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. This results in everything from dislocations to torn ligaments and hyper mobility in the joints to life threatening complications. I've had my share of pain and injuries, from knee surgery to chronic neck and back pain and degenerative disk disease to severe and serious complications during child birth. Early on, I found that Pilates has managed my pain, injuries and symptoms of EDS. It became my daily rehabilitation and has allowed me to prevent future injuries, heal faster and it has also been my career for over 14 years. I own my own studio and I have an online membership where I teach men and women how lose weight, eat better, recover from injury and disease, maintain a healthy lifestyle , and build their Pilates practice. A lot of my clients suffer from Ehlers Danlos Syndrome just like I do. I love that I get to help them bring awareness to their body and help them learn how they can continue to maintain a wellness lifestyle that works best for them. In honor of today being the last day of #edsawarenessmonth I'm showing my zebra stripes and raising awareness for EDS and letting the community know there is hope that we can live more freely and hopefully with less daily pain.” @kellyrobertswellness

 

“My name is María, i am almost 23 years old and live near the City of a hundred Steeples, alias Montréal. My journey with atypical Ehlers Danlos Syndrome started as a quick misdiagnosis, Osteogenosis Imperfecta, also called “brittle bone disease”. I was 13 years old when I had my first heel fracture (with minimal contact trauma...). Frankly, icing, warm baths, bandages, taping, crutches and wheelchairs have been of good use (and my best friends). My outlook on life has changed significantly because of my condition, in a good way. Because of the fact that my body is unable to follow my will at times, art has become my antidote and passion. Throughout my adolescence, I discovered my devotion for visual arts, painting, drawing, singing, music and ballet (as physiotherapy for my heels). PE classes being forbidden for me since primary school, jealousy and misunderstanding has been a huge thing in my life (not for me, but for others. The lack of knowledge of my disease has made me an advocate of not only EDS but the commorbid diagnosis too (POTS, MCAs, chronic depression, asthenia, dysmorphophobia, anxiety and others...). Science may not be able to provide me a new body anytime soon, but i’ve learnt to be proud of my stripes and soo should you!” @_luceononuro_

 

“My dad is from bolivia- they don’t have health care like they do here and have certainly never dealt with a condition like ehlers danlos syndrome. So I was the first in my family to get diagnosed 17 years after i first started showing symptoms, this meant that my dad also had a word for his condition. I think a lot of EDS representation doesn’t show the different intersections- me being latina affects both my care and my history with eds. i once had an er doctor tell me that i couldn’t have EDS because I wasn’t white and he then proceeded to try and treat me for something else, something he felt that a latina could have. I constantly have people tell me my EDS is from my mothers side - because she’s white - and don’t believe me when I correct them. EDS has challenged and affected me in so many ways but the challenge of my ethnicity on top of my disability has easily been the hardest.” @living.being.sick

 

 

“My name is Lindsey and I have Ehlers-Danlos Syndrome, Classic and hyper mobile. Along with it come several other comorbidities that have left me severely disabled. I went from being a very active person who was in the military, and owning my business to having to rely on a wheelchair, being in bed most days, and spending way too much time and the general in hospitals and doctors. I wish doctors and the general public understood just how deteriorating and debilitating this condition is. I wish they knew how painful and lonely it was. Right now I am currently finishing my Biology degree, where my hope is to be able to obtain my PhD and study EDS on the cellular and genetic level.” @chronicallyrara

 

“I’m Ally, a 28 year old disabled human. I have a plethora of physical & mental illnesses with Ehlers-Danlos Syndrome being my main illness. EDS is a connective tissue disease, causing the body to produce faulty collagen. This affects the entire body -skin, organs, autonomic nervous system... just everything. EDS has caused me to develop a form of Dysautonomia called POTS(postural orthostatic tachycardia syndrome) & that’s why I have a port. I receive Saline infusions five times a week & I am on in home care with nurses coming to see me weekly. Needless to say, EDS really likes to mess with your body. All of my main ailments are considered rare diseases, & that is why raising awareness is so important. I chose the Ehlers-Danlos Aware Causes necklace because not only is it beautiful, but it is a conversation starter.. many people have pointed to my necklace wondering what it’s for, so I’ve been able to raise awareness just by wearing it! It really means a lot to me; awareness that is. Awareness is so important. Awareness helps to aide in educating the public & our medical professionals -thus increasing better care. Awareness can raise funds for research since there still is no cure for EDS. Awareness brings about a community of understanding & I am proud to wear this necklace every day.” @ally__strong

 

“Hey everyone! My name is Hadley, I’m from Los Angeles, California, and I turn 18 on April 22. I was a kid who was easily injured, but that didn’t stop me from playing the sport I loved. I played volleyball competitively for over six years and my chronic illness story started in 10th grade when I received two concussions. This lead to the discovery of postural orthostatic tachycardia syndrome and ehlers danlos syndrome. After that, my medical list snowballed into mast cell activation disorder, gastroparesis, eosinophilic esophagitis, and food allergies. I choose the zebra necklace because it represents ehlers danlos syndrome and that is the root cause of all my illnesses. I hope to spread awareness and that might help us with more research to find treatments or even a cure.” @chronically.hadley 

 

“Hi, I'm Leah! I'm an actress, a philosophy student, a girlfriend, a daughter, a musical theatre performer, a teenager for another few weeks.. and a visually impaired Ehlers Danlos warrior. My EDS (currently dx hEDS, but awaiting testing for cEDS & clEDS) causes upwards of 85+ joint dislocations (some partial, most full) everyday, with yet to find an exception. I'm on daily pain relief that most doctors wouldn't dream of putting a 19 year old on - and it just about manages to dull the pain. I lost 90% of my sight over a lunch time at school, and had to learn to use a white stick and a wheelchair within a year of each other. I fit, faint, and can only sustain a primarily liquid diet. My day's consist of lectures, auditions, essay writing, show rehearsals, tech runs, revision, performances, hospital appointments, 19 hour days on studio sets, exam prep, blood pressure checks, 30+ tablets, a hell of a lot of singing.. And most importantly: spending time with my incredible family, wonderful other half, and close friends. For everything that EDS has taken from me, it's given me a career as a wheelchair performer, strength, and a unique perspective on the world and on show business, too. It's given me a fire, a determination that cannot be put out.” @leahrachel.zeb

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