I've got a rare genetic condition (Ehlers Danlos Syndrome) that causes crazy flexible joints, frequent dislocations, and a bunch of other not fun and crazy stuff, AMA!

Can you clap with one hand by having it smack against the inside and outside of your forearm?

Would you be interested in filming a niche porn category with a woman that is very flexible and can be folded up to fit in a suitcase, box, or oven?

As a kid I used to be able to the clap thing with my left arm, but after a bad wrist dislocation I'm no longer able to. And as for the niche porn? The money would have to be pretty good.

Oh, I can't pay in money until post distribution.

Would you settle for a free small frosty with any purchase at Wendy's and 20% of all profits?

You make a tempting offer

At what time of day would you go to wendy's and use that offer?

9:00

have you met any others with your condition? because it is so rare, do others with the condition tend to know the same specialists?

I have met others, its a goal of mine to meet as many as possible, and I go out of my way to do so. Often we do trade specialists and treatments that we have, but usually we end up conversing on normal things. It's usually an instant connection because the other person understands exactly what a part of my life is like that almost no one else I know can relate to. I even went to my senior prom with a girl who has EDS!

I have Marfans syndrome which is similar to EDS... can we be friends?? Haha

Sure haha

fellow EDSer here :D

Hello there!

Ok now it's not so rare anymore.

it impacts 1 in 2,500 to 1 in 5,000 people

Really? Almost every study I've read places the more common types around 1 in 5,000 to 1 in 20,000, and the rarer types obviously are much less frequent.

I have EDS too! I feel like all EDS'ers have at least one ridiculous subluxation/dislocation story. What's yours?

Shattered my right kneecap in my freshman year gym class, not a fun experience. Do you have a crazy one?

That's neither a subluxation/dislocation, nor ridiculous. Surely you've got some kookie ones! My EDS wife tore her subscapularis and dislocated her shoulder at the same time while reaching for a cookie. I still don't know how the hell she did that. XD

The shattered kneecap was a result of a violent dislocation, I forgot to clarify! But yeah, it was certainly not fun.

I have a friend with EDS and she's constantly struggling due to it. I know it's widely considered an 'invisible illness' (we bonded over my Crohns disease and some of the similarities) so what ways have you found useful for coping with people who seem to overlook or not believe your condition?

I tell very few people, it's a need to know basis for me, I don't like people knowing tbh. My friends know, and believe me. But teachers & administrators can be tough, thankfully I have doctors that are happy to write notes and supply proof for me if necessary. It can be very frustrating at times.

There are also tons of stories of doctors and medical professionals giving people with EDS and other invisible illnesses hell because they don't believe them, which is really messed up. I'm very fortunate to have the doctors and specialists I do, because a lot of patients don't, especially with a disease like EDS.

I was diagnosed with Crohns very young and when I switched to an adult doctor he actually tried telling me all the tests I had done (by a good hospital and NUMEROUS INTRUSIVE tests) were just wrong. He didn't listen to a word I said and wrote me off completely. I just remember feeling very angry and then very sad. I've had a few similar hospital trips as well.

I'm glad to hear that you have doctors and friends who listen to you and support you. It's so hard to find them with illnesses such as EDS. Good luck and good vibes being sent your way for dealing with it! Wishing you more good days <3

Good vibes to you as well! I'm sorry you had such a crappy visit, I wish you the best as well!

Teacher here. If you live in the US, you should have an IEP on file with your school that details what you can and can't do because of your condition. You are legally entitled to certain accommodations due to your disorder. You will have zero problems with school staff after you go through the IEP process. They know that if they don't follow your IEP you can come back with a lawyer and sue. Just talk to a counselor to initiate proceedings.

This document will follow you through college and into grad school if you wish to go that route. It would be worth your time.

Oh I have that, substitutes, and hard ass teachers can still be a nightmare, but most are accommodating!

Hi! My sister has EDS as well, seeing her deal with it is a little soul crushing. Props to you for staying strong. What's the best way you've come to cope with it? What's your best mentality to deal with it day to day?

My creative pursuits get me through so much, if I didn't have music or art in my life, things would be so much different for me, I have no doubt. I'm also lucky to have some really special people in my support system, some of whom are sick and do amazing things for making support systems for other sick people.

I first learned about EDS from the Howard Stern Show of all places - a notorious caller named Eric the Actor claimed to have it. Have you heard of him?

I have heard of him, to be honest the first time I heard of him was when he passed away a few years back.

Is that red rocks bro? It looks like it. Was just there today.

It is!

What happened that made you and/or your family think that you weren't just accident prone and that there was something medically wrong?

I was very healthy growing up, until I started my growth spurts, then my kneecaps started dislocating frequently during athletics. That required a lot of physical therapy, where they discovered all my joints were loose, but nothing else was thought of it. That was about 6th/7th grade. These issues persisted, and got worse, then as I grew, I didn't put on any weight, and started to have stomach problems. My uncle is a doctor, and got some specialists to look at me. At first they thought I had Marfan's (a somewhat similar disorder on the surface), but when I was 16 I was diagnosed correctly. So essentially it was when I started to get dangerously skinny, but in hindsight, there were tons of flags that were dismissed as normal, which is common in patients with EDS.

So, this impacted your athletic passion, what did you find to replace it?

I was always interested in creative stuff, I played guitar growing up, but lost interest due to sports, same with art. I got back into those very quickly, and I love them, more than I did sports. It became my mental therapy. I'm now studying product design in college, and really loving it. So in a way, I've got my illness to thank for that.

Would your super-stretchy abilities give you an advantage with any musical instrument? Piano maybe?

It hasn't helped me tremendously, but I am able to stretch across frets a lot easier than most guitarists, but it can also be a hinderance. I have to use light gauge strings in guitar and bass, because if they are to thick and hard to manipulate, I will end up with dislocated or swollen fingers because of the strain. One of the most famous causes of possible EDS is from 18th and 18th Century Italian Violin virtuoso Niccolò Paganini. He was known for being able to stretch his fingers to hit notes much easier and farther than is peers, but there's no definitive proof of him having the illness.

Interesting! Yeah, I play guitar as well as having the ability to stretch helps a bit, but with multiple ways to play each chord it's usually not necessary to strain unless you like the tone color of a string more than the same note on an adjacent one.

I didn't think about the guage of strings part. That's harsh. I use 10's on electric and almost am thinking about going to 11's, except that it makes barring chords hard for me. 9's seem too light and I feel like I'd break them by picking too hard, but I also use a really heavy pick and tend to pick hard at times. I find it's good to just get used to 1 setup and stick with it so that you can have a nice feeling about playing that particular setup.

I usually go with 9s or 10s, it's my comfort zone of a really sweet tone and physical comfort. I use some interesting chord voicing and such, but I like having something that makes me sound a bit different.

Not OP but fellow EDSer. I found I am able to get really good reach with most instruments but can't play string instruments without lots of pain due to how loose my finger joints are. I did find success and advantage in archery, however, due to my bodily awareness from years of always having to be hyper aware of what my body was doing to avoid dislocation. One of the biggest parts of getting a consistent shot in archery is being hyper aware of your positioning and keeping it the same every time :)

I can't pull a bow back without one or both of my shoulders dislocating

Yeah, fortunately, my shoulder doesn't give me much trouble unless I've had an accident or I'm not paying attention. My lower body is far far worse.

That's awesome you're able to do archery then! My knees and shoulders are my worst by far.

Which dislocation hurts the worst? I have only dislocated a hip after a fall while skiing and it was horrible.

It depends, since I've got so much metal and scar tissue in my knees, definitely the kneecaps. I've never had a full hip dislocation though, that sounds super intense and horrible.

Well, the hip was my most excruciating moment of pain, and I've experienced a broken nose, 2 broken wrists, a couple surgeries and given birth 3 times. Kneecaps sound awful though, and aim sure it's more complicated in your case. How about you don't experience mine and I won't experience yours.

Sounds like a good deal

Can you suck your own winnie?

Ive never tried, but if I stretched out a lot, and worked at it, no doubt that I could. Besides not having interest in it, it would be harmful to my back in the long run.

Are your parents moderating this AMA? 👀

No, but I'm a rebel. I frequent Disney.com without parental permission quite a bit, I'm just a bad seed.

How often are you dislocating joints? I dislocated my knee when I was 14 and it's not a very fun feeling.

Not OP, but also an EDSer. How often we dislocate or subluxate(partial dislocation) really varies from case to case and type of EDS. I personally sublux multiple times per day, but don't fully dislocate nearly as often. I am also very careful and have gone through a ton of PT to learn how to avoid dislocation as much as possible.

I'm very similar in this way

If it were to become a option. How does a person in your position feel about having gene therapy to correct the problem in your self, or descendants?

It definitely is a hot topic in the EDS community, and in my household. Perhaps if it gets good enough, I'd try it out. Right now the just too far off for EDS, as they're not even able to diagnose through genes for HEDS, so it's just theorizing. But when it becomes available I'd no doubt consider it.

Which type do you have?

Hypermobility Type/ Type 3

That what it sounded like. My sister had the same type. She's been trying to convince me to get tested because she thinks I do too, but its hard enough to find a doctor in my area who even knows what it is..

It can be an absolute nightmare, I was only able to see someone who can make a diagnosis because of my uncle who's a pediatrician. Even then it was still difficult. I wish your sister and you the best of luck and health!

I have EDS too. Do you ever think about not having children so they don't suffer the same difficulties you have?

My conditions not made life easy at times and I'm not sure I want to put my potential kids through the pain and discomfort I've faced.

I think about that a lot, and it's really made me not want kids. I never really wanted the family life like that, being sick just made me realize it more.

I feel bad. So when you type, will there be a chance that you'll dislocate your fingers? Or has that already happened?

Never happened when typing actually

I know someone with it, and she sometimes has to wear morphine patches. She is amazing though, and often just puts up with the pain - so that she can continue working as a nurse. (Seriously, she's superwoman.)

Is pain medication something you have to be concerned about? Do your doctors try to keep you away from the harder narcotics because of the addictive potential and your age (since there's no cure, and eventually tolerance makes pain meds less effective)?

Or do you manage your pain in other ways?

Thanks in advance!

She sounds super intense and awesome. I was on painkillers for a little bit, but I hated it. The pain is a lot, but I can manage. If it gets worse, hopefully medical marijuana will be available and legal nationwide. I have a lot of pain, but I've been able to build up muscle around weak joints, and for me, having a good diet really makes a difference. Obviously no medication is not an option for everyone with EDS, but friends of mine who have it in Legal states for medicinal marijuana have had amazing results with it.

Fellow EDS sufferer here, do you have any family members that also have EDS that you know of?

When my mother got diagnosed with EDS after getting wrong diagnoses for years it was also found that my brother, grandfather and myself all had it in one way or another.

We think that maybe my grandmother (mom's mom) had it, but she died before I was diagnosed (not from anything EDS related). I've heard from a geneticist, that the theory for guys to get it, is that perhaps it needs to come from both sides of the family, but that's all theory. Other than that, I really have no idea. It's pretty crazy because my sister has an entirely unrelated rare disease and my parents are the healthiest people I know, I guess we just won the wrong kind of genetic lottery in that sense haha.

Funny you mention that about guys getting it as it is most prevalent in men in my family with my brother, grandfather, and a great uncle that may have had it. Until my mother none of the women in the family presented symptoms that correlate with EDS that we know of. Meanwhile my father has no trace of it whatsoever in his family, they seem pretty normal with just heart attack and cancer risk factors to look out for.

That's very interesting. I should clarify that the large outnumbering is most prevalent in type 3, which is the most common type, and the one I have. I believe that most of the other types can be more balanced, but I cannot say for sure. I've never heard of a case as male dominated as yours though.

So OP which EDS type(s) are you?

Hypermobile type/ HEDS

My son has Menkes disease, which apparently used to be confused with EDS. He has most symptoms that you have described so I can see why now. He's only 4 but he's got the loose skin, joints that are super flexible and pop out of place, bladder issues, really light blue eyes, and a high palate with dental crowding. Did any of those things affect your self esteem when you were younger or did you not realize you were different from your typical peers until much later?

I looked, and still do, look very normal. When I was so skinny, I hate myself. I hated looking like a skeleton, I still feel like I do, and I don't anymore. I had very little self confidence to begin with, due to a lot of other factors, and my disease just made it so much worse. Even when I was a kid, I was kinda different, like I always did my own thing and making friends was always hard, as especially in middle school and early high school, social life is a shit show. I struggled a lot because of that mixed with my illness, I've struggled with anxiety and depression my whole teen and early adult life, but that's not just because of my illness, but I would be lying if I was saying it didn't play a huge factor. It's not an easy road, but if you support, listen to, and encourage your son, that's the best you can do.

I notice that your knee is pointing in a different direction than your foot, is that a part of your condition too? I have the same problem.

I have no idea, it very well could be, but I haven't seen or found any studies or evidence. I've mostly grown out of that particular issue.

Hello! This is probably a stretch but have you heard of the band Porch Cat from Bellingham, WA? Their lead singer is a woman with EDS and her band was how I learned about it. Maybe check them out, they're pretty good and the lead singer was really nice!

I'll definitely check them out!

Whatkind of advice would you give to people whose SOs have EDS? I've been dating a woman for about a year now who has EDS Type-2. I've learned a lot about the condition over the last year, but sometimes it still feels like there's a disconnect. We're currently in the waiting stage for a C2-T1 fusion surgery coming up in September, so it's been kind of hard trying to do my best to support her. Thanks!

I wish her and you the best of luck with the surgery! As I have a sister with a different rare disease, and a cousin with an even rarer and other different rare disease, so I know how how taxing it can be to be a supporter and family member, as well as a patient. It means the world to someone just to know you care, listening is huge. For me, it's the small things that make a difference on the bad days. Like if I friend calls me ho and we just talk for 15 min on the phone on a bad day, it means the world to me since I can't change the fact I'm having a bad day. But when someone knows I'm having a shit health day, and does a small thing like that, it's huge for me. And celebrating milestones even small ones, and making the good health days worth it. It's hard to be there for someone, especially voluntarily, so good on you for sticking by your partner, and you sound like you really care about her. What you can do to show her that you care can mean so much.

I have yet to have a patient with your condition. Do you have any ocular manifestations that affect your eyes or vision? Sometimes patients with EHS have what is called blue sclera, in which the whites of the eyes have a blue tint. It's also seen in Osteogenesis Imperfecta.

Woah, a doctor! As of now, I do not have anything that impaired my vision, and my eyes have a very light blue tint, but it's barely noticeable. I've met other people with EDS with some seriously blue tint, it's really interesting to see actually. I've heard that EDS patients are more susceptible to Lazy Eyes because of a lack of tissue strength behind the eyes, and I have to get tested frequently just in case I develop anything. I hope I could answer hot question well!

Does your condition mean you have too little collagen or too much? Or does it change your collagen in some crucial way? Also, are you Stretch Armstrong?

I have collagen, my body just doesn't produce it correctly, the amount isn't effected by it. Basically it produces a normal amount, it's just much weaker structurally. And sadly no, I am not Stretch Armstrong :(

I saw someone with this condition on Gray's anatomy yesterday so I Googled it. The pt was there for dehydration after having 1 beer. Have you been advised to avoid alcohol?

Never been advised not to, and haven't had a bad experience with it. I don't drink much though, and I always make sure to have water and food with it, I haven't heard of a case of that in real life with EDS, but I have no doubt that it could happen, knowing how weird the disease can be.

Have you ever tried to do a type of dancing called bonebreaking? With your condition I would imagine you would have something of an advantage. Look up some videos, there's a song by skrillex called red lips. The music video is how I got into it. It's easier than it looks, you just have to stretch a lot.

I've seen some of that! For me, that kind of joint stress, is very harmful, because I've already damaged them so much from athletics and injuries. Most of that is the same for many EDSers, but there are a few that have the ability to do crazy stuff like that and not damage themselves like I would. Those are usually the ones that end up being contortionists and such, which is super cool.

What are you majoring in?

Industrial Design (basically the design of products)!

I have a family member with EDS. Lots and lots of weird auto immune related issues. Have you looked into LDN? (Low Dose Naltrexone)

Not something I've ever looked into personally, as my inflammation (which is what they would look to treat with it for me) isn't extreme, but I've met people who it's helped a lot!

Is the top photo from Red Rocks? Are you a fellow Coloradan?

It is! And I am not, but my family visits there all the time, so it's definitely familiar to me.

What sports did you do?

My main ones were basketball and soccer, but I also played football and baseball growing up.

Is there a silver lining?

For me, it made me realize my true passions, and it's led me to meet some truly amazing people who have become very close to me. Gotta take the good with the bad.

Hi there, my grandmother had EDS, my sister had it and my 3 year old twin daughters have just been diagnosed. My sister has had multiple dislocations and a few operations. My twin girls joint are fine so far but their ski splits all the time, they have had 5 operation on their legs already as any sort of impact splits their skin wide open. Do you have the same skin condition? They also bruise very easily.

Not to that level no, I have met people that have it that bad. I do cut easier, as well as bruise and scar just as easy.