May is Ehlers Danlos Syndromes (EDS) Awareness Month
This color-changing nail design was inspired by my journey to EDS diagnosis, starting from complete darkness and confusion to "getting warmer" until the illness was finally revealed and a zebra was staring back.
I was diagnosed with EDS six months ago after many years of unexplained illnesses and injuries. It is a connective tissue disorder said to occur in 1 in 5,000 to 20,000 people, few of whom are estimated to be properly diagnosed, thus many doctors never come across it over the span of their career, much less have treated it. EDS is described as "the most neglected disorder in modern medicine". It currently takes an average of over a decade for EDS patients to reach correct diagnosis if ever at all, and this very challenge is the reason for its symbol, the zebra. As the old adage goes doctors are taught "when you hear hoofbeats, think horses not zebras" - to always look to the most common and probable causes of a condition while discounting the rare and unlikely ones - but, once in a blue moon the sound really will be from a zebra. I know that the one thing that would have significantly shortened my own search more than any other factor would have simply been to have doctors apprised of this disorder, so I wanted to do what small part I can to spread awareness in the hopes it could possibly shorten that process for a fellow zebra.
About Ehlers Danlos Syndromes
EDS is caused by a flaw in a person's DNA coding which prohibits their body from producing normal collagen, the most abundant protein in the body that acts as the binder to hold all its parts intact. Whereas normal collagen is resilient and snaps back into place like a rubber band, mine is like Silly String, flimsy and stretches on without shrinking back until it eventually just tears to pieces. (And no, overdosing on collagen supplements unfortunately does not offer EDS any relief, no more than feeding hair to a bald guy ;-).) Collagen is fiber-like building blocks of connective tissues, so EDS symptoms can basically occur anywhere there are cells, meaning it is common for patients to visit many different types of specialists separately for seemingly unrelated health concerns. (I myself have been erroneously suspected of having everything from fibromyalgia to autoimmune disease to hypochondria to a domestic situation.) Simply having more doctors in the field who have heard of this disease and its signs could switch EDS from an illness that is very difficult to recognize and diagnose to one that has a heightened probability of diagnosis because patients are typically seen by so many medical professionals.
This color-changing nail design was inspired by my journey to EDS diagnosis, starting from complete darkness and confusion to "getting warmer" until the illness was finally revealed and a zebra was staring back.
I was diagnosed with EDS six months ago after many years of unexplained illnesses and injuries. It is a connective tissue disorder said to occur in 1 in 5,000 to 20,000 people, few of whom are estimated to be properly diagnosed, thus many doctors never come across it over the span of their career, much less have treated it. EDS is described as "the most neglected disorder in modern medicine". It currently takes an average of over a decade for EDS patients to reach correct diagnosis if ever at all, and this very challenge is the reason for its symbol, the zebra. As the old adage goes doctors are taught "when you hear hoofbeats, think horses not zebras" - to always look to the most common and probable causes of a condition while discounting the rare and unlikely ones - but, once in a blue moon the sound really will be from a zebra. I know that the one thing that would have significantly shortened my own search more than any other factor would have simply been to have doctors apprised of this disorder, so I wanted to do what small part I can to spread awareness in the hopes it could possibly shorten that process for a fellow zebra.
About Ehlers Danlos Syndromes
EDS is caused by a flaw in a person's DNA coding which prohibits their body from producing normal collagen, the most abundant protein in the body that acts as the binder to hold all its parts intact. Whereas normal collagen is resilient and snaps back into place like a rubber band, mine is like Silly String, flimsy and stretches on without shrinking back until it eventually just tears to pieces. (And no, overdosing on collagen supplements unfortunately does not offer EDS any relief, no more than feeding hair to a bald guy ;-).) Collagen is fiber-like building blocks of connective tissues, so EDS symptoms can basically occur anywhere there are cells, meaning it is common for patients to visit many different types of specialists separately for seemingly unrelated health concerns. (I myself have been erroneously suspected of having everything from fibromyalgia to autoimmune disease to hypochondria to a domestic situation.) Simply having more doctors in the field who have heard of this disease and its signs could switch EDS from an illness that is very difficult to recognize and diagnose to one that has a heightened probability of diagnosis because patients are typically seen by so many medical professionals.
If you or a loved one might be suffering from EDS
There are two telltale signs of Ehlers Danlos Syndromes, a combination of one very specific trait and one very unspecific trait:
1) having unusually flexible joints or being "double-jointed" (also known as hypermobility, which you can check for online with a quick test called the Beighton test),
and
2) having a wide range of comorbidities where the patient "looks healthy" yet is constantly ailed by a spectrum of seemingly random symptoms (such as but not limited to repeated sprains, subluxations, and dislocations, migraines, sleep apnea, fragile skin that splits and bruises easily, osteoporosis, TMJ and dental issues, motor delay, digestive and gastrointestinal dysfunctions, Chiari malformation, widespread joint pain and chronic fatigue, neck instability, POTS, autism, heart problems, muscle weakness and spasms, temperature and blood pressure dysregulation, compression fractures, organ prolapse, skeletal deformities, depression and anxiety disorders, poor wound healing, high-risk pregnancies, nerve damage, swallowing difficulties, early arthritis and disc degeneration, CSF leaks, insomnia, scoliosis, ADHD ...) The list not only goes on, it actually is infinite.
Your suggestion to them to seek a trusted rheumatologist to be assessed for Ehlers Danlos Syndromes may very well and thankfully be wrong, or may forever change the course of their life and wellbeing for the better. Because EDS is genetic and there is no cure, ongoing management becomes key. Sooner diagnosis for EDS patients not only directly results in preventing significant suffering and bodily damage for the individual, but more social recognition can also encourage more research into this rare illness, even expedite an effective treatment.
(May-June 2023)
2) having a wide range of comorbidities where the patient "looks healthy" yet is constantly ailed by a spectrum of seemingly random symptoms (such as but not limited to repeated sprains, subluxations, and dislocations, migraines, sleep apnea, fragile skin that splits and bruises easily, osteoporosis, TMJ and dental issues, motor delay, digestive and gastrointestinal dysfunctions, Chiari malformation, widespread joint pain and chronic fatigue, neck instability, POTS, autism, heart problems, muscle weakness and spasms, temperature and blood pressure dysregulation, compression fractures, organ prolapse, skeletal deformities, depression and anxiety disorders, poor wound healing, high-risk pregnancies, nerve damage, swallowing difficulties, early arthritis and disc degeneration, CSF leaks, insomnia, scoliosis, ADHD ...) The list not only goes on, it actually is infinite.
Your suggestion to them to seek a trusted rheumatologist to be assessed for Ehlers Danlos Syndromes may very well and thankfully be wrong, or may forever change the course of their life and wellbeing for the better. Because EDS is genetic and there is no cure, ongoing management becomes key. Sooner diagnosis for EDS patients not only directly results in preventing significant suffering and bodily damage for the individual, but more social recognition can also encourage more research into this rare illness, even expedite an effective treatment.
(May-June 2023)
What Not To Say To A Hypermobile Person
What to say instead? Hmm. Aside from not encouraging hypermobiles to demonstrate the extents of their flexibility to you (and certainly not gathering people around to "check this out everyone, do that bendy thing again!"), from personal experience I can't really think of any "positive" comment on my flexible body that would make me feel better than just being told nothing at all and left able to pretend that I'm not being eyeballed like some mutant specimen. I'd just say in general it's good to avoid making comments on a stranger's physical trait no matter how enviable you might assume it is; you just never know what their real story may be.
(There is nothing wrong with wanting to compliment someone. Just imagine, if we replaced every compliment we make about someone's physical trait with a compliment on their inner attribute (like personality or compassion or attitude or generosity), how much kinder and happier this world would instantly be!)
But I digress.
The curious thing is, if public attention on hypermobility is not such misguided fawning, then it's usually the exact opposite:
This one baffles me a bit especially in this day and age. Even before we as a society finally started becoming somewhat aware about body-shaming and its toxic harm, I can think of few other body types where complete strangers and sometimes even medical professionals being sought to help the very condition, openly express and report just how much the very sight of the person's body repulses and revolts them. It is more than someone simply reacting to seeing a joint movement that would normally hurt or break something in their own body and offering concern, although isn't that technically still the same as all forms of body-shaming and why it is wrong, where an uninformed stranger is not only judging someone for appearing different from what they hold to be normal or healthy but also having the ego to find it completely their place to deliver their opinion? Furthermore, I can't think of many other diseases where the general public comments blatantly and directly to the sick patient on how disturbing and odious their physical symptoms appear, when they could just as easily say nothing or avert eyes or walk away. The reason there is this zero filter when it comes to hypermobiles is precisely due to the lack of recognition that this condition is often a manifestation of a serious illness, instead getting ogled by society in the forms of party tricks and circus acts and salacious fantasies.
In either of the above situations, just view us as fellow human beings and you'll be able to check if your comment is an objectification or not ;-). If you must open your mouth about a stranger's flexible body, here are some things you can say to them instead:
(June 2023)
- "You're so lucky you're so flexible."
What to say instead? Hmm. Aside from not encouraging hypermobiles to demonstrate the extents of their flexibility to you (and certainly not gathering people around to "check this out everyone, do that bendy thing again!"), from personal experience I can't really think of any "positive" comment on my flexible body that would make me feel better than just being told nothing at all and left able to pretend that I'm not being eyeballed like some mutant specimen. I'd just say in general it's good to avoid making comments on a stranger's physical trait no matter how enviable you might assume it is; you just never know what their real story may be.
(There is nothing wrong with wanting to compliment someone. Just imagine, if we replaced every compliment we make about someone's physical trait with a compliment on their inner attribute (like personality or compassion or attitude or generosity), how much kinder and happier this world would instantly be!)
But I digress.
The curious thing is, if public attention on hypermobility is not such misguided fawning, then it's usually the exact opposite:
- "Oh my god that is so creepy, you just gave me the chills."
- "What your [body part] does is just freaky and wrong."
- "I can't look at you without getting the heebie-jeebies."
This one baffles me a bit especially in this day and age. Even before we as a society finally started becoming somewhat aware about body-shaming and its toxic harm, I can think of few other body types where complete strangers and sometimes even medical professionals being sought to help the very condition, openly express and report just how much the very sight of the person's body repulses and revolts them. It is more than someone simply reacting to seeing a joint movement that would normally hurt or break something in their own body and offering concern, although isn't that technically still the same as all forms of body-shaming and why it is wrong, where an uninformed stranger is not only judging someone for appearing different from what they hold to be normal or healthy but also having the ego to find it completely their place to deliver their opinion? Furthermore, I can't think of many other diseases where the general public comments blatantly and directly to the sick patient on how disturbing and odious their physical symptoms appear, when they could just as easily say nothing or avert eyes or walk away. The reason there is this zero filter when it comes to hypermobiles is precisely due to the lack of recognition that this condition is often a manifestation of a serious illness, instead getting ogled by society in the forms of party tricks and circus acts and salacious fantasies.
In either of the above situations, just view us as fellow human beings and you'll be able to check if your comment is an objectification or not ;-). If you must open your mouth about a stranger's flexible body, here are some things you can say to them instead:
- "You seem to be hypermobile; have you had any pain or checked out if you have any form of joint hypermobility syndrome?"
- "Do you know about the Beighton hypermobility score that can quickly measure your flexibility and tell you if you're at risk for related conditions?"
- "You might want to talk to a rheumatologist to find out different ways you can prevent joint wear and protect your body from injuries."
- "Check out Yoga with Ayako: century-old yogic wisdom for every body, passed on by a centenarian master of joint preservation and taught by her hypermobile protegee with Ehlers Danlos Syndrome."
(June 2023)
The EDS Wall
So I've had this weird headache for two weeks.
After
So I've had this weird headache for two weeks.
After