IAmA 17 year old with a rare genetic condition known as Ehlers-Danlos syndrome.

How rare actually is the condition in percentage terms ?

I personally know 4 people with EDS and I wouldn't call my circle of friends very large.

How rare actually is the condition in percentage terms ?

I came here wondering exactly the same thing. I know several people with EDS in my circle of friends.

Tiktok has kids everywhere thinking they have it. Its "trending".

yeah this sucks. it's ruined online support groups for me. being young and having eds rn you get a lot of "did you just find that on tiktok?" "are you looking for attention" etc. really really blows because i've had this forever!!! why would i fake something that ruins my life ! lol

It's a tough one.

I was born with a form of Muscular Dystrophy. The most common type is Duchenne which affects 1 in 3,500 males world wide and it's very severe. Those born with it are usually unable to walk by their teens and rarely survive much into their 20's.

The type of Muscular Dystrophy I have is still officially undiagnosed but is very similar in symptoms to Bethlem Myopathy which, like EDS, is a collagen problem and affects 1 in about 130,000 of either sex.

Online support is a problem because if you go to a Muscular Dystrophy group it's understandably populated by people (or their parents) who have one of the more common types which bear little relation to mine and groups focussing on Bethlem are rare because not many people have it.

Is this the same for the different types of EDS ?

definitely. there are people with vascular type, which is one of the rarest types of eds, who never get support groups because of how rare it is. most eds groups are full of hypermobile or classical / classical-like people.

I missed the phase where it was an online trend, but I dislocated my shoulder blades and used my arms as a jump rope in front of a crowd at a baseball game once. The groans of disgust from everyone there. It was great. Now only one shoulder easily dislocates.

oh my god that's amazing

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which is just fantastic for people who actually have those, isn't it? (unamused emote)

Exactly. Gastroparesis alone suuuuccckkksss and I've had it since I was a little kid. Do you have it as part of eds? I didn't realize it was a symptom of it til later on.

i don't have gastroparesis, but i have some mild GI issues. not fun either way!

you're lucky! the incidence rate varies based on type, but the overall for all the ehlers-danlos syndromes is 1 in 5000. the only other people i know who have eds are my mom and sister LOL

That's very interesting because of the 4 people I know who have it, only one of them is male. Is it more common in women or is it evenly split ?

it's more common in women, or at least thought more often to be. diagnostic rates don't really reflect the actual rate of occurrence with stuff like EDS- it's so often misdiagnosed that people don't know they have it.

16 or 17? You're even overflexible when it comes to your age.

17 in two weeks. LOL. just for simplicity's sake, i rounded up :')

Don't worry, in 8 years or so, you'll want to round down for the rest of your life!

HAHAHAH

Jesus christ people. The kid already has Ehlers-Danlos and you're already started with the nit-picking?

lol

How do you manage it? Like what precautions do you have to take to try and keep yourself healthy?

managing it is really hard some days, really easy other days. i have two types of canes i use as needed, a bunch of various braces, and i take OTC painkillers when i need to. another bit of managing it for me is knowing my limits! i also have my bedroom arranged in a way that is easily movable for me. ex: low resting bed, so i don't have to climb or jump up. eating well and doing low impact exercise helps as well.

This is super helpful; I’m still learning how to live with mine. So far specialist Pilates, alexander technique, and low impact exercise (swimming) really helps me too. Well done on the ama, even if it worked out weird!

thanks :') glad you're finding ways to work through it. remember that all of our bodies with eds are different, so it's good to find what works for you. for example, i got recommended stretching, because it's worked for a lot of people with eds. it made me sore for WEEKS so i had to stop LOL. just finding my own groove has been helpful

Have you thought about going to the gym? Friend of mine with hEDS is a big fan of lifting and finds it very empowering.

i'd love to go to the gym, but the condition of my joints has basically ruled that out for me. i get elbow dislocations carrying in my groceries, and i often wake up with knee/knuckle/ankle dislocations or subluxations, for context as to how mine works! if i were to work out, it would just degrade my joint tissue even further.

There are many workout routines specifically designed for EDS. A physical therapist, or occupational therapist could help ya out.

i've tried to get in with physical therapy, it's just fallen through every time. insurance issues one time, full appointments the next. i'm trying again soon, though! i really really want physical therapy.

If you manage to figure it out, hydrotherapy rather than land-based physiotherapy was an absolute game-changer for dealing with my hypermobility. I did one and the other before two different surgeries on the same leg and the surgery where I was doing hydrotherapy I got all range of motion and longish walking, decent balance back weeks earlier. I think you get more done in the pool with less recovery time.

It also helped a lot to see a physiologist for hydrotherapy rather than a physiotherapist, the one I saw just had a much larger understanding of how different bodies work, so when something wasn't working for me she was instantly able to make something else up on the go. One physiotherapist I saw tried to tell me that hypermobility wasn't something that causes issues in people and that overextending wasn't a thing because my body would 'naturally guard' itself. I left and never went back.

i'll look into this! it sounds like a game changer, and i love being in water anyways

Have you searched for PTs on the EDS website? It's how I found mine.

oooh good shout. i'll give that a try and see how it goes

that's fascinating! I also have hypermobility and, ironically, my doctor advised I should work out in order to avoid getting dislocations/subluxations. does this mean you've now learned how to put your knee/elbow back into place by yourself when it happens?

yeah, i can put everything back as needed. it hurts like hell, but by now i am very used to it! my low impact workouts help my muscle strength so i can keep the dislocations to a minimum, but even then, my joints tend to just come out of place really easily.

Heey, fellow zebra here and my shoulders dislocate carrying groceries. High five.

it's always the elbows and shoulders. ahhh it blows

As someone who also has a chronic illness, I can’t explain to you enough how unheartening this statement is. I used to run long distance and play collegiate rugby. But then I started experiencing chronic pain and within a year, I couldn’t walk.

The amount of people who didn’t even know me told me I needed to “learn how to walk correctly” or “go to the gym”. It was all very well intended, but it hurt every time because it reminded me of something I likely lost forever.

What DID help me was finding the right doctor who took me seriously and got me the meds my body needed. Now, I’m back to light activity, but still no gyms for me! Not yet at least.

TLDR: do not, please please please, do not just tell people with chronic illness to go to the gym.

this too! i used to play volleyball and competitively swam until my body started to give out. some people with chronic illnesses will go to a gym if it's within their limits, but we typically know what we can/can't handle.

Is it genetic? and by that reason more common in different countries or areas? I have not heard of the syndrome or even less so anyone affected by it, but looking at the comments it looks quite common in other places.

EDS is genetic, but each type has a different gene. my type has no known gene! (woo :') ) i don't think any data-based numbers are out there for an overall country-based prevalence rate.

Fellow zebra myself with hEDS as well. Curious about the other issues that accompany this disease. Do you experience issues with POTS (heart condition) and MCAS (mast cell activation syndrome)?

no MCAS as far as i know. diagnosed POTS, currently taking 20mg propranolol 3x daily and it's almost entirely negated that for me! i went from fainting almost every day to rarely even getting dizzy.

Does this disease have any long -term implications for your health?

As a fellow Zebra (EDS'er), The luxations and subluxations wear out the muscles and joints. It also damages a lot of the bone and cartilage when it happens.
Also the follow up of disasters is because our collagen is produced faulty. So basicly the foundation of our body is messed up from the start. Build a house on it; it's bound to collapse.

This also means that our eyes degrade fast (eyes are made up out of 70% of collagen if not mistaken). Our healing proces is slower because of this faulty collagen. We have easy bruising; we wake up and look like we had a tumble down the stairs. That kind of easy bruising.

EDS also causes for Rheuma and arthritis to be set in at early age.

I must mention that not everyone with EDS Has the same symptoms nor experiences them all the same. Hence the Zebra for EDS because not every Zebra has the same stripes.

If you're interested in more specifics check out the EDS Society: https://www.ehlers-danlos.com/ehlers-danlos-info/

yes to all of this ! hello fellow zebra :)

I'm a physician and I don't think that anyone who knows what they're talking about with classify hypermobile EDS as a "zebra". It's not very rare in the world of medicine.

I don't doubt that OP has hEDS but I feel like this thread is contributing to the online glorification of hEDS and there is a lot of misinformation in this thread.

it isn't a classification from a doctor. it's just a fun name within the community. there's nothing wrong with that, IMO.

What types of treatments do they employ for this illness and have there been any strategies you use to minimize symptoms/impact?

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this. "you can't walk for longer than 20 minutes? just get on a treadmill!" a lot of the advice seems redundant, but does help.

it definitely does. i'm probably going to end up needing surgeries on my joints, depending on their conditions as i age. i'll also have degraded mobility over time, seeing as once my joints wear down (which is already at a rapid rate) it'll be harder to move. some people with EDS end up getting joint fusions. i'd like to avoid that- but it's out of my control.

I've had 2 shoulder reconstructions because of my EDS. If you want to talk to someone who's in their 30s with it and has been dealing with it since they were 12, feel free to reach out to me.

thank you :') it really helps to know that there are other people who i can talk to about it who have actually lived the experience. hearing "i totally understand" from able bodied people gets pretty tiring LOL

Are you familiar with Eric the Actor?

i'm not, why do you ask?

What are your thoughts about your future? Short term and long term? It could small goals, big goals, how you cope with things. Etc.

i'm about to start college, i'm gonna be majoring in english. i took a year off after i graduated last august, because i needed the rest (for many reasons !). long term, i hope to become a teacher. my experience in school sucked, so i want to make it better for kids later on.

coping stuff? music and pro wrestling are my go-to comfort things. i play a bunch of instruments too. i like cooking and baking, as well. all in all lots of distractions and LOTS of naps. lol

My son-in-law has this disorder, recently diagnosed at 30. Any advice about the best way to help/support?

offering a helping hand as needed is my favourite type of support. i don't like being treated like i need constant help, because it makes me feel less capable of doing things myself. stuff like just "hey, if you ever need help with anything, let me know, i'd be more than happy to help" really makes it feel like you've got someone behind you. of course, it's also great to just ask him what he specifically needs! everyone with eds is different and has different needs. "i want to support you as best as i can, how can i do that?" is great.

How are you?

No like genuinely, how you holding up?

I have fibromyalgia, I know living in constant pain/exhaustion takes a toll on your mental health. I understand. So how are you?

(I'm 28, had this about 4-6 years)

i'm doing alright. i'm in therapy for unrelated mental conditions and it's been good to talk to someone about the mental effects of such a condition. it's a part of chronic illness nobody really talks about, isn't it?

when i'm not in too much pain for it, i like to play my bass and guitar. i have two cats, charlie and kenny. i listen to a WHOLE LOT of music, and i like to watch pro wrestling, too. there's a bunch of stuff that keeps me happy, when i'm not in a bunch of pain.

thank you for asking. people always forget about how mentally exhausting it is to be physically exhausted!

It is hard but I make an effort to always ask & hopefully others will start too.

I do craft related things to help me. It's something I can do without much movement & gives me something to focus on that isn't the pain.

I'm glad you're in therapy. I've had CBT to help me cope and to come to terms with being disabled. I hope you keep it up and take care of yourself.

thank you :)

Wtf do I have it too?? I have scoliosis as well 😱

you seem pretty hypermobile LOL. it might be worth talking to a doctor, i'm not really able to give any yes/no type answers.

What made you decide to get tested for it? And what are you currently doing to improve your scoliosis? I was made to wear a medical corset for 3 years but it did jack shit. What made a difference for me was physiotherapy.

my mom found out she had it, got tested, and was confirmed. i decided to get tested because of that and because my body is in pretty rough condition, which isn't normal for a 5'4 guy on the lower end of the healthy weight range. my other conditions all coincide with eds, so it just makes sense to get me looked at.

my scoliosis was never a huge bend, so i never had a medical corset or brace, but they pointed it out and i've mostly just tried to fix my posture.

How has being diagnosed changed your life?

my diagnostic work up with genetics is next month, but even just since talking to doctors and having the cardiologists confirm on their end that it's eds, it's been INFINITELY better. i can get the care that helps me while specifically keeping my condition in mind.

With that flexibility, have you succeeded at that one thing every teenager attempts?

LOL. i have not attempted it. i feel like it'd work, though?

LMAO THE GOLD ON THIS

Have your doctors talked to you about seemingly unrelated issues tied to EDS?

I think more people should be made aware of other issues related to EDS, such as incompetent cervix and cornea problems. It's not always safe for people with EDS to get laser eye surgery, for example. And women with EDS who want to get pregnant should talk to their doctors about preventative measures to preterm labor and the signs of it.
Fellow zebra here. It runs in our family. I can twist my entire leg around so my feet point backwards. But that cool party trick isn't worth having to wear knee braces!

yep! i see an opthalmologist for my eyes, in case they get worse. cardiology for my heart condition. just finished seeing pulmonology for my asthma, since it's entirely managed now. the pregnancy bit isn't a concern for me LOL. and yeah, the party tricks aren't worth the pain!

Are you a fan of RuPaul's Drag Race? Yvie Oddly is one of my favourite queens, and she also has Ehlers-Danlos! Do you get a sense of pride from seeing people representing your condition to a wide audience, and do you feel a sense of kin-ship with other people with EDS? Sorry that's a few questions there!

i haven't watched rupaul in so long (my mom used to watch it, i would always tag along) but it's very cool to see people being so open with it, considering how debilitating it is. i could not imagine doing drag with this condition lord have mercy i would crumble

They've had a few queens that have been super open about their conditions and disabilities over the last few years! I remember Yvie saying on S11 that she wouldn't have much longer left of being able to push her body to such extremes which in itself is pretty eye opening to anyone that's not heard of EDS before. Definitely recommend seasons 11 and 14 for some good disability rep (and generally fun times) :)

i'm not really the TV type, but if i ever get the time i'll check it out. and yeah, it's gotta be interesting to hear about how debilitating this stuff really is if you've never heard of it!

Oh hi! I have this also though mine is a less serious case! I have to pop my joints multiple times a day to prevent pain and can dislocate my joints doing every day activities (dislocated my elbow once buckling my seat belt).

I hope wish you a peaceful, pain free life. 💜

Adding a question mark? So the automod doesn't kill my comment?

thank you ! the joint pops are real. my ankles are popping FORWARD lately it's really weird but feels fantastic omg.

Popping my knees is literally the best feeling ever even if it sounds like they are breaking when I do it lol

for real my wrists and elbows always feel so good. i have to be careful with my neck though. if i pop that too hard i get really nauseous.

Do you or will you need contrast agent CT to overwatch how your large vessels like your aorta is impacted?

as far as i know, no, but it would be pretty interesting, wouldn't it? i'd love to see the scans from something like that. so far though, i don't need that!

Yes it would be interesting indeed and above all lifesafing. I am working in a large hospital in Germany. Especially in an „aortic surgery unit“. As far as i know there is a risk for aortic dissection or even aortic rupture in EDS and Marfan-Syndrom patients that cannot be neglected. As you have a already said there is a malfunction in your collagen and therefore your large vessels may not resist high blood pressures as long as they would do in people without your condition. I wish that this will never happen to you, but patients we are treating with this kind of complications in particular those of young age <50yo do have EDS or Marfan. I don‘t want to scare you actually i just want to know if these few cases i see every year could have been prevented.

thank you for getting the thought in my head! it's not something i'd normally think about. i'll ask my cardiologists next time i see them if they think that scan would be needed yet!

Seriously, make sure you get a cardiologist and an echocardiogram to document and monitor the size of your aorta. Monitor your blood pressure as you get older to help prevent an aortic aneurysm.

i have POTS, so i already monitor my blood pressure and have had EKG and ECGs done! i have a lovely team of cardiologists :')

Hell yeah. I scrolled further down and saw your response to the one shithead where you elaborated more. I was just concerned because I'm a nurse and have seen some people with EDS who didn't take care.

i see a lot of people with EDS who don't bother to keep themselves well long-term and i'm just like ahhh that's gonna suck in 10 years man !

Do you find issues finding doctors that understand and can treat your condition? I have a friend that has EDS and POTS, and she's gone to various doctors who have said "I don't know much about this, and it's too complex" and sent her packing. She just got admitted to some Vanderbilt program to be seen by doctors that deal with the condition specifically.

YES. i was lucky enough with my mom knowing of a doctor that has treated EDS patients before, but even then, most of my doctors seem giddy with the excitement of seeing a rare disorder LOL.

I diagnosed my ex with this. She went to get testing and luckily only had the classic subtype. Do you know which subtype your mum has? I hope you don't have the ones that can impact connective tissue of your great vessels. Aortic dissection at 40 is not cool

she has hypermobility type, and she's being tested soon for periodontal type.

That's lucky. Some of the rarer subtypes have a severely reduced life expectancy. Interestingly because hypermobile is clinically diagnosed there may be some uncertainty in your family history. Will that be the first time your mum has genetic confirmation of a subtype if she has a c1r c1s mutation for periodontal?

this is the first subtype confirmation we'll be getting, yep.

Are you all doomed to play bass?

LOL. i started playing before my body got too bad, and it's been a huge help in keeping me sane throughout.

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my cardiologist who did my heart scans when i was being worked up for my POTS confirmed i have the structures and tissues most common with EDS. (i had an echo cardiogram done to confirm it wasn't a separate heart condition causing my palpitations and fainting.) i've got an official geneticist appointment next month, which i've been waiting 6 months for because they're so high demand thanks to tiktok fakers and munchies. i have the genetic link in my mother, who was officially diagnosed by a geneticist.

this condition actively ruins my life. i had to drop out of high school and complete my education at home because of it. i had to quit the sports i grew up playing because of it. i live in constant pain because of it. i would not wish this on my worst enemy.

please don't tell chronically ill people that they're faking unless you have serious reason to.

As someone with severe ADHD, I relate heavily to how much it hurts when people don't believe you. That was insanely rude of them.

Why is EDS so commonly faked on social media?

a lot of people fake it for various reasons. attention from having a "rare disease" is a big one. UNFORTUNATELY they fail to realize how insensitive it is when they fake it. diagnostic resources going to perfectly healthy people, medical equipment going to healthy people, and a huge stigma around this condition because now nobody believes anyone has it.

(also i have adhd too lol)