The zebra became the symbol of Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD) due to its unexpected nature. People with EDS often refer to themselves as “zebras” because they are the rarest individuals in the medical community, and the Ehlers Danlos Society has coopted the zebra as its mascot. This identity has been adopted globally through social media to help bring awareness to the condition.
The zebra is the rarity of EDS, and its mascot is the zebra. EDS sufferers are often credited with finding cures for typhus and typhoid fever, and are often credited with the zebra. The zebra is worn in their logo, neck braces, walkers, and other items.
Ehlers-Danlos syndrome is a rare condition that causes joint hypermobility, instability, injury, and pain. Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD.
The Ehlers Danlos Society has adopted the zebra as its mascot because “sometimes when you hear hoofbeats, it really is a zebra”. This concept highlights the unexpected nature of EDS and the challenges faced by those with this rare condition in medical diagnosis.
In conclusion, the zebra has become a symbol of EDS and HSD, as it represents the unexpected and challenging nature of these conditions. The Ehlers Danlos Society’s use of the zebra as a symbol of EDS and HSD serves as a reminder of the importance of understanding and addressing these unique conditions.
📹 Hypermobile Ehlers Danlos Syndrome during pregnancy, birth and beyond
… Midwifery and Health, Coventry University) gives a presentation on “Hypermobile Ehlers-Danlos Syndrome during pregnancy, …
Why is the zebra the rare disease mascot?
Rare Disease Day is a global initiative to raise awareness and support for individuals with rare diseases, with one in ten Americans being a zebra. Historically, medical professionals were advised to look for horses when hearing hoofbeats, but now they know that one in ten Americans is actually a zebra. With over 300 million people worldwide living with rare diseases, many are left isolated and without answers to their medical questions. This year’s event takes place on February 29th, the rarest day of the year, to raise awareness and generate support for those on a rare medical journey.
Is Ehlers-Danlos a rare disease?
Ehlers-Danlos syndrome is a genetic disorder affecting at least 1 in 5, 000 individuals worldwide. The most common forms are hypermobile and classical, with the hypermobile type affecting 1 in 5, 000 to 20, 000 people and the classical type occurring in 1 in 20, 000 to 40, 000 people. Other forms are rare, often with only a few cases or affected families described in medical literature. Variants in at least 20 genes have been found to cause Ehlers-Danlos syndromes, including COL5A1, COL5A2, TNXB, cardiac-valvular, arthrochalasia, vascular, dermatosparaxis, kyphoscoliotic, and other rare forms.
Genes associated with Ehlers-Danlos syndromes, such as COL1A1, COL1A2, COL3A1, COL5A1, and COL5A2, provide instructions for making different types of collagen, which assemble to form mature collagen molecules that give structure and strength to connective tissues. Other genes, such as ADAMTS2, FKBP14, PLOD1, and TNXB, provide instructions for making proteins that process, fold, or interact with collagen.
Variants in these genes disrupt the production or processing of collagen, resulting in weakening connective tissues in the skin, bones, and other parts of the body, resulting in the characteristic features of Ehlers-Danlos syndromes.
What is the mascot for EDS?
Zebras are the adopted symbol of Ehlers-Danlos Syndrome (EDS), a rare condition often misunderstood in medical school. The story suggests that doctors should focus on horses for common explanations, while the zebra represents rare conditions like EDS. This encourages the medical community to think creatively and consider EDS/connective tissue disorders as potential underlying diagnoses, promoting a more inclusive approach to understanding and treating EDS.
What is the symbol of the Ehlers-Danlos Society?
The Ehlers-Danlos Society logo, inspired by the phrase “When you hear hoofbeats behind you, don’t expect to see a zebra”, aims to promote recognition of individuals with Ehlers-Danlos syndrome or hypermobility spectrum disorder. The Society was founded in 1985 by Nancy Rogowski and has since expanded to become a global organization, with the Ehlers-Danlos Society becoming a symbol of recognition and support for those affected by these conditions. The zebra logo represents the idea that sometimes hoofbeats can be a sign of a disorder, highlighting the importance of early identification.
What is the zebra disability symbol?
The Ehlers Danlos community uses the zebra as its symbol, but this principle applies to anyone suffering from a rare condition that is often misdiagnosed by doctors and takes years to be correctly identified and treated. Zebras are also a useful symbol to highlight the differing symptoms experienced by disabled people. Each zebra’s unique stripes, similar to human fingerprints, represent the range of different symptoms and experiences of people within the disabled community.
There are thirteen types of Ehlers-Danlos syndrome, and everyone’s experience with the condition varies. Zebras can serve as a reminder to acknowledge the individual experiences of people with disabilities and the unique needs they have in their daily lives and work lives.
Not all people with disabilities have visible symptoms, as some may appear perfectly normal and healthy around 80 percent of the time, while others struggle with menial tasks, such as opening heavy doors or manoeuvring office chairs. This can lead to misunderstandings and difficulties in understanding and accommodating the unique needs of these individuals.
Do people with EDS have autism?
Autism Acceptance Month in April is a reminder of the higher likelihood of being autistic in individuals with joint hypermobility, Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorder (HSD). Research by Brighton and Sussex Medical School found that over 50 participants with autism, ADHD, or Tourette syndrome had elevated levels of hypermobility compared to just 20 from the general population.
Neurodivergent participants also reported more symptoms of pain and dysautonomia, related to the number of hypermobile joints. Medical professionals should be aware of this, as autistic individuals may have symptoms or concerns related to hypermobility-related conditions like EDS, and vice versa.
What is the metaphor of a zebra?
The zebra analogy helps us cope with our daily lives by reminding us that our lives are unique, filled with both positive and negative events. Nothing is permanent, and nothing is only “black” or “white” because the gray area exists. As younger generations become more reliant on technology and material items, they are becoming less aware of the reality we face as humans. This divide between youth and adults is growing, as towns begin to border each other.
What is the zebra illness symbol?
Individuals afflicted with Ehlers-Danlos syndrome (EDS) are now recognized as a distinct group of patients with a unique set of medical needs. The advent of social media has facilitated the formation of a global community, fostering a sense of solidarity and promoting greater awareness and understanding of the syndrome.
What disease has a zebra as a symbol?
Individuals with Ehlers-Danlos syndromes and hypermobility spectrum disorders frequently self-identify as “zebras.” Medical students are instructed to prioritize the identification of common diagnoses over those that are less prevalent or chronic, as individuals with rare and chronic diseases frequently engage in extensive and prolonged searches for answers.
What does the zebra symbolize?
The zebra is a symbol of balance, harmony, and unity in African cultures. Its black and white stripes reflect the dualities of life, such as light and darkness, yin and yang, and good and evil. In Africa, the zebra symbolizes individuality, harmony amidst diversity, and the beauty of both light and shadow aspects. The zebra’s essence lies in the perfect equilibrium between light and darkness, urging us to seek harmony in our lives and embrace the dance of opposites. By embracing the zebra’s essence of balance, we can attain inner equilibrium, navigate life’s challenges with grace, and cultivate a state of wholeness leading to profound inner peace.
The zebra also symbolizes the unity of opposites, representing the inseparable dance between light and shadow, good and bad, joy and sorrow. By embracing the unity of opposites, we can develop a deeper understanding of ourselves and the world, fostering empathy and compassion for all aspects of existence.
Why is EDS controversial?
Hypermobile Ehlers-Danlos syndrome (EDS) is a condition with no diagnostic test and unknown genetic basis. It is a common finding in the general population and can vary within the same family. The Beighton score is used to assess joint hypermobility, with a score of 5 or more indicating hypermobility. Although not prone to life-threatening complications, severe chronic joint pain and autonomic dysfunction can impair quality of life and limit opportunities for education and employment. The condition is more common in women than men, and its genetic basis remains unknown. The Beighton score is used to assess the presence of generalized joint hypermobility.
📹 Why are people with EDS called Zebras?
Sorry I haven’t uploaded in a while! I’ve been crazy busy with appointments and life changes. I promise I have lots of new content …
I’m 37+4 weeks pregnant and laying in bed kind of freaking out because I cannot move due to the severe pain in my pelvis. Doctors in my area in Tennessee have NO idea what can be done for this and let me know I just have to suffer and lay in bed until I have her and just have their fingers crossed I am able to move more after birth. I need to share this to everyone in my area. I should not be over looked. Not to mention I couldn’t get the long enough maternity leave I needed for my condition so now I am jobless seeking disability. Thank you for posting this!
I’m almost 17 weeks along with my first baby, and reading these comments, I am SO glad for where I live (NYC). It took 12 weeks to find a doctor willing to see me (I have hEDS with a GJ feeding tube for gastric motility disorders), but once I got in to meet my MFM, I was so relieved. My doctor has seen a lot of patients with all different forms of EDS, he told me a list of risks and what we’ll do to mitigate them throughout pregnancy, labor, and recovery. I was planning on giving him a list of potential complications and requesting extra tests and prevention, but he knew every single possibility and was on top of it. And so far, everything is perfect. Some of my joints are looser now, some are actually more stable (RIP my right shoulder hypermobility). Having a knowledgeable, experienced doctor just makes all the difference in the world, at least for my peace of mind!!
Thank you for posting this. I have had eds 3 symptoms from the age of 13. I was lucky and was diagnosed at 16. I was then diagnosed with pots at 23 yrs old. I am desperate to have children, however, I’m terrified to get pregnant. With my multiple dislocations, torn muscles and ligaments etc plus the horrendous symptoms of pots, the thought of that getting worse during pregnancy scares me. I’ve even had to come to terms with the fact I may never be able to have children. I’m so pleased that these amazing women have done this research and are continuing to help us zebras.
Pubis symphysis was the most excruciating pain I’ve ever had. Now, diagnosed hypermobile it makes sense. I was told that I’m overreacting and not drinking enough water or doing yoga. This was worse than broken bones, torn ligaments, surgeries, etc. For 2 months I didn’t sleep for more than an hour at a time.
My first pregnancy: Late term transverse lie baby (I saw a chiro who did Webster method), awful SPD, failed epidural (they stuck me twice for it to take), issues inserting an IV due to “rolling veins” that are very visible but easy to blow out, rapid labor (my daughter shot out of me lol), severe tearing because my body didn’t have time to prepare for labor. Now 37 weeks pregnant. Yet another baby in a transverse lie, my tailbone area feels like it’s floating around and sometimes feeling like it stabs my leg, legs so loose they feel like they’ll give out…My OB is great but isn’t well versed in EDS. I’m a military spouse who moved states and has an all new medical team halfway through this pregnancy. Fingers crossed that this goes well ❤
I have EDS and I scored 9 on the Beighton scale. Pregnancy caused me less pain with my joints when carrying my first child probably because of the hormones but my child was born at 33 weeks. I couldn’t wait to get pregnant again because I had never felt so good but unfortunately my second pregnancy caused me a lot of pain. My second child was born at 38 weeks. So glad I made the decision to have children, I was left with pelvic organ prolapse but it was worth it.
This has changed my life perusal this article. I finally feel heard! I I always have to get extra anesthesic at the dentist. I’m not diagnosed with eds, I only found out i had it through my yoga teaching auntie during pregnancy. My doctors and midwives just shrugged off the fact my fingers were dislocating up to 10 times every day. I changed midwife and moved in with my mother in law who was a midwife. For my baby I had a home birth at her house. I had contractions for 2 weeks then was in labour for 50 hours, I only had gas and air and a tens machine. I was pushing for an hour and a half. I then bled heavily for a week before they realised I had a womb infection. I had 5 courses of antibiotics over 3 months before it finally went away. I feel really let down by all my health care professionals tbh. I told my therapist about hypermobile people having larger fight or flight parts of their brain than non hypermobile people and she had no idea. I’m going to message my old midwives these articles so women get listened to in the future. Thank you. Xx
As someone with hEDS and Aspergers that were both misdiagnosed for several other issues, I’ve found a few things that work for me, especially during my pregnancies: 1. I have always lived and maintained a constant state of physical activity. This does cause more frequent joint issues, but the activity level has allowed me to manipulate My muscles to my benefit and helps realign myself constantly throughout the day. This also helped during the labor process by keeping a level of fitness in my life and helping my stretchy tissues bounce back a little better than expected. 2. I use cannabis daily to help treat and even eliminate a large amount of my comorbidities, such as migraines, POTS, muscle spasms, insomnia, and gut issues . Prior to cannabis, I was on heavy doses of pain relievers daily and creeping towards a future opiod addiction . 3. I only use assistance equipment ( bands/compression cuffs/ braces ) when absolutely necessary, rather than a preventative to injury. I noticed the more support I used to ease minor issues, the faster my tissue weakened. I am extremely weary of medical intervention due to several instances of trauma due to misdiagnosis. I don’t hold it against anyone emotionally, but I simply am proof that good intent can cause greater harm than good.
I’m so terrified, I’m diagnosed with ehler-danlos syndrome, I got diagnosed at almost 22. The only reason I was diagnosed is because I knew something was wrong with me from a young age and when I started college at 17 I knew something was really wrong. My family doctor who I’ve seen my whole life wouldn’t listen to me. Looked at me and treated me like I was drug seeking or over exaggerating. So, I took it amongst myself to started doing research while I was in college. Two years in to doing my research I was perusal the show “Intervention” and this woman had a drug problem with fentanyl and she said she couldn’t help how much she was taking because she was in pain from her EDS. The show went in to briefly explain it, and she she further explained what she goes through and her brother explained some furthermore. My jaw hit the floor. I had to rewind it to see take it all in, I took all the notes possible. I wrote down everything they said and even checked what episode it was and wrote that down just in case a doctor thought I was bullshitting and I could pull that out. I remember when I seen that I KNEW that’s what I had. It fit me to a T and I just cried. I cried from relief, happiness, but fear because of how horrible it was. But to have a possible answer was everything to me. I was discouraged because I live in Muskegon, Michigan and it’s a poor town where doctors are not kind nor helpful and this town is full of drug addicts and since this disease is so rare I knew I was going to be pushed aside time and time again.
I’ve known I had hEDS since I was 25. Two kids now and it actually eased up in pain levels for me for the most part during pregnancy and it actually seemed to help the birth process go faster, less than mine hours for labor and birth combined, but afterwards, the chronic just jumped up in spades. I did end up getting induced for my second son early because of it
Thank you for publishing this. I’m 6 months pregnant with my first baby and it’s been a nightmare with scarring from Stage IV endometriosis, multiple surgeries, and EDS. My midwfe and obstetrician are lovely, but there’s nothing they have been able to do to make anything less scary and painful, and the birth itself is worrying me.
I have HEDS and I actually gave birth to 2 beautiful daughters who are now in their mid twenties . I did not know at the time that I had this diagnosis, and I ended up on strict bedrest for 9-12 weeks for both girls because my cervix dilated to 6 in 7 at 20 weeks.. I suffered a miscarriage prior to These pregnancies as my body could not hold them in (twins).
I am 26 and I just got diagnosed with hyper mobile EDS. I have a 6 on the baden score. I got diagnosed with POTS and 25 and have had fibromyalgia since I was 21. I have always wanted to have a child. I am worried about how this will affect my ability to have a safe and healthy pregnancy. I am excited to read this article and take it to my doctors when I am ready for this step in my life journey.
I buried a lot of my birth trauma with a simple “I had her in 3 pushes! It was fine!” But what I left out was the preterm labor scare, the placenta previa, the dislocated rib, not being able to move the last two weeks and having my L3 slip forward pinching my nerve so I couldn’t stand upright, the fentanyl injections I got on my hand that only made my hand numb, them having to up my epidural multiple times, the placental abruption my daughter and I barely survived and the fact that while they were drying my daughter off and taking her vitals I decided to stand up, and go pee because my epidural had worn off and the nurses thought I had fallen out of the bed or gotten kidnapped because there was “no way I should have been able to feel my legs” less than 1 hour after my epidural was removed. I hate the dentist for the same reason. But yeah I’m just now looking into a formal diagnosis. I pretty much meet all but a couple of the questions for all 3 criteria but I haven’t been able to find a knowledgeable provider to see to get a formal diagnosis.
I am in the United States and currently 12 weeks. I have loss 4 children before with no living children. I have severe hEDS with 30-40 dislocations and subluxations all over my body daily. I have been refused by my general OGBYN and my high risk fetal medicine specialist doesn’t deliver the baby. I have some doctors telling me that my severe hEDS is nothing to be concerned about or i am too high risk and they won’t help. I have earned many degrees to teach myself about hEDS and i’m a professor anatomy and physiology and i can’t get anyone to help me here in the NC region. No one in Duke or Chapel Hill which is the research triangle of the world. None. I am hoping taking your guidelines helps me at my appoints. Thank you.
I have ehlers-danlos and had 4 kids, my 4th was when I was diagnosed. No one believed just how bad pregnancy and recovery was for me. My 4th pregnancy I couldn’t walk and was in pain that could not be stopped. I had 1, 2, and 3rd degree vaginal tears with my 3 pregnancies, I used a cane then a wheel chair. After I had my 4th I used a cane. I’m 7 months postpartum and my right leg needs help some days because it hurts from my hip and si joint issues. It was traumatizing to be pregnant and dismissed as if I was being a baby about normal pregnancy pains. I have scoliosis and 2 epidural only numbed half of me. The most painful part if it all was the week before when the pain never let up from my hip and si joint. Nothing helped and I thought I would die at my 4th birth.
I have really bad hypermobility!! I hope to get pregnant this year but i have been in terrible chronic pain in my neck and shoulders and hips for a few years now but didn’t know why. Very stiff rhomboids and neck and hip pain. My bones pop in and out of place all the time and I get terrible pinched nerves. I am nervous about what pregnancy will be like. I just found the root cause of my pain is this hypermobility and I can do all of the 9 point test. I have learned that I need to do joint stabilizing exercises. Do you know anything else that will help me??
Im actually shocked I came across this article. Pretty sure I have EDS/ hypermobility and have simply been living life as “very flexible.” Now that ive learned more about EDS Ive scored myself on the Baton scale and feel i have undiagnosed EDS.. Im also pregnant with my 2nd child and this article shocks me because I barely I had told myself months ago theres probably no education on EDS and pregnancy and here is a article!
Omg!! I am the bendiest and only just heard of this recently this is ne all over. My placenta was in a bad way and stuck had to have emergency surgery twice after my 2 daughters because it wouldn’t come out etc. I have asd also. But I am 200% sure I have this. Ehlers-danlos. I have double jointed shoulders and have always been over flexible, bruise easily, small ears no lobes, pointy nose, hit every point with pinkies, thumbs, hands on floor the while lot 😮 my 2 births were do traumatic in 2013 and 2019. In Australia
My oldest son had ehlers danlos he had type 9 and died at the age of 33 he was diagnosed when he was 5 years old they did a lot of tests on him how they found out, they took a sample of his skin and sent it off to england to Dr white and thats how we found out we were told it’s passed from the womens side and now my grandson has it and he is 17 years old and his problem is he keeps getting taller the doctors at shriners hospital had did a lot of surgery s
Hey, I’ve kyphoscoliosis ehlers danlos type 6A. I also went blind in one eye 5 years ago and was told I could be totally blind in time. I’m 38 currently and have wanted to build a family for years but I’m so scared of dying in childbirth or pregnancy taking the last of my eyesight away so I can’t see my kids grow. Would people advise for or against pregnancy with PGD and IVF in a 38 year old woman?
My daughter is 16 now, but got diagnosed last year when she was 15 with Hyper mobility EDS, POTS & and congenital heart disease called LVNC (Left Ventricular Non compaction). She never complained about her symptoms as she thought everyone felt the same way and would just persevere through her injuries, even with a broken arm at 5yrs old. I had to really advocate for her, especially when she could have died in the middle of a volleyball tournament and was ignored by her cardiologist. When I wouldn’t let it go, the cardiologist referred her to a Physiologist Cardiologist who has been so wonderful with her. I’m so appreciative that you’re sharing your story and experiences. Can’t help but cry as I agree w/every article and what our daughter has been going through. She will be encouraged to see feel less alone.❤❤❤