I am a 16 year old male diagnosed with a fairly rare genetic disease called Ehlers-Danlos syndrome (EDS)

Is your only regret that you have Boneitis?

Yes

First a disclaimer. I know this is going to sound like I'm trivializing your condition...I genuinely don't mean it that way! Is the "only problem" (I'm cringing writing it that way) that you've got hypermobility and flexibility problems, or are there other associated symptoms that would, for instance, give you a poor prognosis? (I apologize again for how that sounds.)

All good I understand. There is a chance of heart problems occurring but thankfully neither my sister, or myself have them. But other than that, just knowing that if I do any physical activities without a brace on, there's a good possibility i'll dislocate my knee again.

Thanks for the reply. I'm going to read about this condition now!

Thanks for entertaining me during my recovery!

Wait. You can get heart problems? Dammit.

I just thought the worst thing is getting back problems early and snapping my knee back into place.

Yeah a certain time can yield heart problems :/

Guess it's time for a visit to the doctor. Thanks for the info!

Oh and since it's an AMA: Did you use to pop in your knee yourself or let a medic do that?

It goes out then immediately back in actually.

Oh. Then the follow-up question. What exactly happened there:

did the kneecap just go somewhere it shouldn't, or did the meniscus dislocate, or something else completely?

The kneecap just went somewhere it shouldn't.

Zebras for life! Unless they develop some kind of gene therapy, in which case this sucks and I'm done.

So how do you know which type you have without skin biopsy? I pretty clearly have hypermobile joints, translucent skin, easy bruising, and POTS, but I don't really know for sure that my symptoms mean I have vascular type vs. just some vascular symptoms.

Also, I read your comment about sports and wanted to say that swimming was my sport all through school. Lowest impact of any sport, and Michael Phelps has a bunch or Marfan characteristics so clearly hypermobility isn't the same kind of problem in the water.

I went to Cincinnati Childrens Hospital and they did a series of angle test where if your joint bent >X* you got a point. Anything over a 4/9 I believe is hyper mobility.

I love to swim and love the water but I live in a small town so the closest swim team to me is a 25 minute drive :/ We have a pool at our house so I'll just stick to that.

Cincy children's is awesome! Did you see Nielsen? He's really great

Ours was a lady

I've never heard of this disease. Exactly what is it and how does it affect your future goals?

It's a genetic disease. There are different types of it. Mine, hyper mobility, basically makes almost all my joints "double jointed". In addition to that, my ligaments are much more stretchy and have more room for error than a normal person. I also have very stretchy skin that bruises easily. As for my future - I'll have to wear a brace that keeps my knees from dislocating whenever I do any physical activity. I used to be a fairly good athlete and was hoping to play sports at least in college, no chance of that now.

My girlfriend's mother has one of the different types and is currently recovering from surgery. She had a shunt put in the base of her skull to stop her brain from pushing through the brainstem hole.

Oh wow, that's much worse than the stuff my sister and I have. Much love to a fellow zebra <3

Has this affected your ability to walk? Alternatively has it worked in your advantage; as such are you a great gymnast?

It doesn't affect my ability to walk unless I'm recovering from one of the dislocations (6 weeks per). Yes actually, I am quite good at that sort of stuff. I've been told that I have a better cartwheel than most of the cheerleaders at my school :)

Isn't this the same as what Eric the actor had?

Not familiar, idk

What would you say to someone who may have the disease or just got diagnosed? I'm bringing it up with my doctor because of my hyper mobility and pots-like symptoms. I haven't been able to work or go to school so I hope for a diagnosis soon.

Listen to the damn doctors.... Wear a brace when you're told, you can't get around that. Why haven't you been able to work or go to school? The pain?

The pain is part of it but it's more fatigue and weakness. I might also have fibromyalgia so that complicates things

I've never had a problem with pain, fatigue, or weakness aside from recovering from actual injuries.

I've got this too! Though fortunatly a very mild form, my only problem really joint pain. How did you get your diagnosis?

I went to Cincinnati Children's Hospital and they did a series of tests over a couple hours. All the tests were external and didn't require any blood/saliva.

How long did it take you to be diagnosed ?

Where I live (France) it takes a lot of time since the syndrome is not well known.

A girl I know from high school has EDS, which is how I know of it, and has started a youtube channel where she talks about living with it. (It's in french)

I'll link it here for those who are interested.

I wish you a quick recovery OP !

I was told after my second knee dislocation there was a pretty good possibility I had it. So maybe 1 year..... I don't speak French so I really can't check it out. But good on her for making a positive out of this shitty hand we were dealt! Thanks much.

most people in the USA end up getting diagnosed because they are migraine suffers. Around 75% of females with EDS hyper mobility experience migraines and that's usually how it ends up being diagnosed. (that's how I was )

I weirdly never have headaches let alone migraines. My sister complains about them a lot but wasn't diagnosed by that.

Hey! 23 year old girl here with EDS type 3! I got it from a one in a million chance random mutation though, no one in my family has ever had it despite lots of testing. Anyway, thanks for representing your fellow Zebras during EDS awareness month! :)

So my response doesn't get deleted, I guess my question is: do you plan to have kids? I am going to pass on children because I'm scared to pass it on to my children, so I'll probably adopt.

Well I'm 16 so I'm really not thinking about it yet. If I had to choose now, no. I wouldn't want my kids to go through this.

Whatever choice you make will be the right one. If you need any non-family EDS friends to talk to about it, my inbox is open!

Thanks, really means a lot!

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My daily routine honestly isn't affected much, as long as I wear braces I'm pretty much normal.

My best friend has this, how can I better support her?

I'm not a very high maintenance/emotional individual but my sister is EXTREMELY dramatic and high maintenance. My grandma does a great job of supporting her but she takes any injury she has wether it be real or fake, and fully supports her. I prefer to be treated like I don't have the disease at all but idk if she would like that.

Have you had any success with using that stretchy athletic tape to stabilize joints? I've been using it on my knees, because it feels less constricting than wearing braces, but my skin keeps tearing. I've been diagnosed with "benign hypermobility syndrome," and if this is the mild version, yikes. I feel like my ligaments and cartilage are made of slowly dissolving gummy candy.

I only use braces because I prefer to not take any risk. My sister only wears that tape, she likes Kineso. Our physical therapist said that it's the best brand and she's had success with it.

I was misdiagnosed with a slew of conditions before I was properly diagnosed with Ehlers Danlos Type III Hypermobility. I'm curious, did you have the same problem with being misdiagnosed? Also, when did you start to develop symptoms and hyper flexibility?

Nope the diagnosis they did with us was pretty straight forward as in "If you do this, you get a point, 4 points means you're hypermobile" so there really wasn't much room for error.

Also, I just looked at your recent surgery picture. I'm surprised that they opened you up that much. I had patellar realignment done on both knees when I was your age (14 years ago), and I have 5 short laproscopic scars on each knee. Did you get a choice on how they conducted the surgery?

Yes actually I did! We chose to use a donor hamstring as to not add more recovery time to me.

Wow! How much recovery time did you avoid?

I have no clue I wasn't really listening a lot when he was running through it because I know he had done it before. I'll ask my mom and if she knows I'll let you know.

how has EDS effected your life?

what's your favorite movie?

Well I used to be a prettt good athlete. I thought I could at least play D1 baseball. That's never gonna happen now.

Shooter. I love Mark Walhberg!

I did a presentation on EDS in school. Really interesti g abnormality. Have you suffered any of the awful skin tears that I've heard can happen? Sounds scary

No I've never even heard of them. They do sound very scary though.

Doctors have described stitching up someone with EDS like stitching butter...it sounds worse than what it "really" is but her skin is very very flexible?/stretchy and can kind of tear itself away from the stitches leaving interesting scars.

I've only had stitches once, my first surgery. That didn't happen to me but I definitely did pick at it a lot and made it look really bad.

How do the hospital staff treat you? Do you get treated with more care and stuff?

Well I was only in the actual hospital for like 5-6 hours. Other than that I don't really go to the hospital much.

What does the surgery do?

It basically takes a ligament from the inside of my kneecap, wraps it around my kneecap so it's harder to dislocate.

I might (and my family) actually have this. We haven't done testing or had a formal diagnosis yet. Been on crutches for three years because my Osgood-Schlätter's won't heal.

You ever have an injury that's stubborn like that?

No I've never had anything like that. What are the doctors saying?

We've always gotten injured easily and not healed well. It's taken an unusual amount of time for me to heal, and we've had two rounds of cortisone.

My eldest sister once got nerve damage in her arm. She "caught a football. Well, sort of."

My mom has had a history of tissue damage. Had over twenty surgeries.

Sjögrens, arthritis, and a bunch of other stuff runs in the family.

We also get migraines, which my mother said were possibly part of this (but she has a habit of saying stuff that reaffirms her argument without facy-checking first, so I take it with a grain of sand). My second older sister has them 24/7.

We have a history of nerve damage, too. At first we thought it was HNPP, a rare genetic nerve disease where nerves lack a coating of a protective sheath. After getting the insurance company to cover the $15k tests (which was quite the hassle, living in the US), tests came back negative.

We are extremely flexible as well, though not to the degree you have described.

That doesn't sound like hyper mobility, maybe one of the other types of EDS?

What type of "good" side effects does this spawn?

Well I can do a really good cartwheel :) My sister likes the attention she gets from it but I am not like that. Overall nothing really good I guess.

Here I was thinking "Ill make a bunch of money shoving myself in a box some day.

To each his own.

Actually because of my surgeries I can't bend my knees as much as a normal person. Even having them bent in a car for 20 minutes require me to straighten them out for a second. That's why I can't play catcher in baseball anymore. Probably good actually lol.

Did you know Eric the Actor from the Howard Stern Show had Ehlers-Danlos? He said repeatedly that he outlived his diagnosis by decades. Hang in there man!

Well I don't think I'm old enough for that show lol. That's awesome though!

Besides this, is everything else alright with you? I bet your social life isnt really the best. Im 17 and if i were stuck home with that disease, I'd fall into a serious depression. I hope you do well in life, bro.

After the first surgery I did fall into a pretty bad depression. Luckily for me, most of my friends play Xbox so i can still keep my social life pretty up to par.

Has there been any ocular manifestations diagnosed ? I would recommend more routine eye health check

I have extremely good eyes, so does my mother. My father and sister both are essentially blind without glasses.

My cousin actually has EDS, and they thought I had it for a while. Got diagnosed with another obscure disease instead though. My cousin didn't get diagnosed until she was in her 40s, When did you first start to suspect something was up?

When I dislocated my left knee 3 times in the span of a year. My physical therapist had actually done some research and brought it to our attention.

are you aware of this young lady?

she's doing a lot of advocacy about EDS

https://www.youtube.com/user/LivingWithEDS

No I've never heard of her, my sister would probably like that though.

Did they used allograft for the mpfl reconstruction?

Yep, they used a donor hamstring.

I have EDS as well! I assume you have hypermobility type? Sending hugs and well wishes to you!

Thanks! Same for you :)