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

May 22nd 2017 by vlTNTlv • 21 Questions • 267 Points

I scored an 8/9 on my hyper mobility test, my sister, age 11 scored a 9/9. I've dislocated my left knee 3 times (None since the surgery!) And the right one once. I'm recovering from my second MPFL reconstruction while writing this. Ask me anything!

Hyper Mobility of arm MPFL Reconstruction of left knee 3.5 years ago MPFL Reconstruction of Right knee 1 week ago

Q:

Is your only regret that you have Boneitis?

A:

Yes


Q:

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.

A:

Yeah a certain time can yield heart problems :/


Q:

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?

A:

It goes out then immediately back in actually.


Q:

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?

A:

The kneecap just went somewhere it shouldn't.


Q:

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

A:

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.


Q:

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

A:

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 :)


Q:

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.

A:

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?


Q:

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

A:

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


Q:

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 )

A:

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


Q:

Thank you so much! Best wishes to you and your family too :)

A:

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.


Q:

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?

A:

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.


Q:

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?

A:

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


Q:

Wow! How much recovery time did you avoid?

A:

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.


Q:

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

A:

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


Q:

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.

A:

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.


Q:

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

A:

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.


Q:

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.

A:

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.


Q:

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

A:

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


Q:

are you aware of this young lady?

she's doing a lot of advocacy about EDS

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

A:

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


Q:

Did they used allograft for the mpfl reconstruction?

A:

Yep, they used a donor hamstring.


Q:

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

A:

Thanks! Same for you :)