IAMA 14 year old boy with "Hyper mobility syndrome." AMA.

Hyper mobility syndrome makes it sound like you are super human fast. What a dumb name to give this syndrome.

I guess it was just how it was named, but I can actually run a little faster than most kids my age. :)

Forrest Gump? :D

'Run Forest Run!'

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If the surgeons hadn't been able to do what they did, then I'd probably have to get metal legs.. I'm just grateful enough that I was able to still keep my real legs! :)

If everything goes south and your bones start crumbling again, just make the doctors replace every bone in your foot with a similar bone but made of metal. You could kick people so hard with that.

Got a little chuckle out of that, I'll remember that when someone makes fun of me. ;)

He could be like Jax from Mortal Kombat but legs instead of arms.

Haha!

I have hypermobility syndrome as well, just wanted to wish you luck with it all. Sounds like you've had some really nasty stuff happen because of it, my only tips are to maintain muscle tone and fitness, maybe ask for some physio when all your joints are 'ok', the stronger you are, the less dislocations will happen etc. Our tendons are really stretchy so if you have strong muscles it pulls them up (awful scientific explanation I know). Although you have been affected at a young age, it means your doctors and family will be better at monitoring and supporting you. The average diagnosis age for hypermobility is 20s-30s and I know a lot of people get told to stop being melodramatic by doctors until its diagnosed. Not saying you've had it easy, clearly its far from that, but if you're ever feeling down about it, you have a much more informed support network. My only question is, do you get chronic pain in your joints? I'm curious as i'm a 20 year old female and girls are more likely to get the chronic pain due to hormones and i've never really spoken to a guy who has hypermobility. Anyway i've been diagnosed for 5 years now, PM if you want to chat about it or have any questions about how it gets as you get older. I'd also recommend online support forums, there's some brilliant UK ones and i'm sure other countries have them too. Keep trucking :)

Thank you for those kind words, I didn't have any pain before I had the surgery. But I did start getting it a few months after the first operation... Seemed to clear up on it's own. :)

:PS: I will upload some pictures tomorrow, incase you wanted proof.

The mods are not going to be very happy with that.

Edit: on phone, accidentally sent it before I added questions.

But question.

Do most of your friends know?

Does it keep you from participating in sports?

I told all of my past and present friends, they all thought the scars were a bit digusting, but the way I can bend the joints of my hands, arms and legs made up for it! I can't play any physical sport. Rugby, football..etc. Cricket is something I can preform with ease. I also edited out the last sentence.. Since right now I have nothing to take pictures with!

Yeah, I see a lot of IAMA posts saying "Pics?" So I got a little worried... :p

Im not gonna ask you anything. Im just gonna tell you my story. I was born with a tumor, wich caused me to be unable to walk at the age of 10. right now im 19. And if i have counted right, ive been to 14 operations. This sucks. i know from my own experience. but, if you ever feel sad. Think about future, it will be all diffrenet :) you can do what ever you want. :) and im glad you can now walk already. Hope you won't loose that feeling ever. I feel for people who can't walk. cause it really sucks not to be able to walk. remember. Stay stron, and be strong! :)

I will, and I hope you will as well! ^{^}

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At first, it did hurt quite a bit.. But gradually I was able to walk without any pain. I can only walk for a certain time, I'd say.. 1 to 2 and a half hours? Before my feet start to ache.

nigga i thought this ment you were just hyper

The name can be misleading! :p

exactly how much ass can you kick

None, Since I hate violence, never resorted to it.

If you had the chance to trade places with one of your friends would you? How do you feel your character has been shaped as a result of your Hyper Mobility Syndrome?# What hobbies do you have?

1. No, I wouldn't want to put one of my friends in that sort of position. All things happen for a reason, so I could say I'm glad it was me and not some other kid out there.. 2. Well, I did get rather overweight due to not being able to walk.. I'd say I'm getting back on top, but it'll take it's toll. 3. I have a couple, I'm currently studying photography and the violin when I'm not at school, plus a little gaming as well. :)

I'm going to be honest, I read that as hipster mobility syndrome for a second and thought it was a circlejerk post. Sorry about that.

No problem!

What do you want to work with in the future?

Either being a photographer, or a violinist.

After reading that you have overcome this feat and ALSO became a photographing violinist who plays video games you are now eligible to claim your certificate of bad-assery, use this wisely, for with great power comes great responsibility.

Thank you, I will send an email to the company in the morning. Nice. Lord of the rings! ;)

Just a few days ago a woman who used her mind to control a prosthetic limb did an AMA. If technology somehow leaped 25 years into the future and you could replace your limbs with these kinds of prosthetics, Deus-Ex style, would you do it?

Nope! I've seen what happenes to people in that game.. .-.

If you could trade one of your fingers, one of your testes, or the ability to grow hair on your head for complete healthiness in your bones, would you? If so, which of the three would you trade.

I think I'll leave those parts alone, thank you very much..

Hey there, hypermobility bro. I've got EDS 3 (Hypermobility) myself -- not quite as bad as yours though.

Did you find that your symptoms lessened when you started puberty? Mine didn't, but it turned out that I wasn't producing enough on my own due to an unrelated condition that didn't get diagnosed until later in life. I started taking testosterone cypionate for that condition when I was 21. There was some concern that this would interact badly with my EDS (treatment with steroids can sometimes make EDS worse, but I sort of needed it anyway because of the other thing, so it was like, fuck), but it ended up cutting my EDS symptoms (plus the other stuff) in half because it made my muscles strong enough to hold stuff in place. I'm still sick, but the difference has been amazing.

Maybe finishing puberty will have a similar effect on you. If not, you know, maybe have your testosterone levels checked? Perhaps it could be a viable treatment for you too.

Once I got to that stage, I never really felt change once it started.. Most of the symptoms were mostly. 'Loss of feeling from foot to kneecap' "Come and going pain..' It was quite a while since I got them.. Stay strong, you'll get better soon! :)

My father has EDS. Please, take care of your body, it's absolutely horrendous watching your sub-50 year old father degenerate into a pile of depression and pain. Watching him struggle to pick up my infant son, knowing that just 5 years ago he was doing handstand push ups in sets is depressing.

Listen to your doctors, stay attentive, and, most of all, appreciate the time you have. You may soon be confined to a bed. Spinal fusions are no joke.

What a sad experience, I will, thank you for the advice. :)

I'm 18 and have been recently diagnosed with it as well as EDS, it's nice to know where the joint pain is finally coming from, but it's a shame that there aren't a lot of treatments for it.

You're very brave to go through with this, I mean, I already know how painful it can be, but at your age and what you have already been through, I only hope you keep fighting through, with all the advances in medicine in this day and age, you can only imagine what might happen.

Thank you, that was very nice. :)

Have you been on an airplane before? I bet metal detectors are a pain.

Also, how have your classmates treated you, or are you home schooled?

I have been on airplanes before, but they were when I had the screws taken out, so I didn't need to worry about getting stopped! All my classmates were fairly nice to me.. They all took turns in pushing my wheelchair! ;) I am currently home schooled, but I plan to go back once I get back on track with my subjects!

how much could a woodchuck chuck chuck if a woodchuck could chuck wood

Approximately 3.9675 pounds every 5.6843 seconds.

Do you walk "normally"? Or do you need assistance and/or have a limp?

At first I needed support, but I gradually got the better of supporters, and I managed to walk on my own!

I'm a 24 year old girl with the same disorder, but in a different category. You can get it from soft bones, loose ligaments or misshapen joints, I happen to have loose ligaments. I can dislocate most of my joints, and am super flexible, without having to stretch first. It's not as cool as it sounds. I promise. http://imgur.com/a/8uPpl

Poor thing.. Well, you're perfect to me! Everyone is! :)

*graft

Thanks!

I'm glad that you're healthy and that you overcame such a big obstacle. Did you ever think that there was a chance you would have to have your legs removed, and if so were you a little excited about having metal robo-legs?

I /worried/ constantly thinking they would cut off my legs, but no, I wasn't that excited to have metal legs.. But, if I ever wanted to walk again..

Do you plan on running some day?

I actually run now, but I can't for long!

Are your legs/feet like the average person's now? Can you run or play sports?

Yes I can run. No I can't play any physical sports! Only cricket, but I've took an interest in golf! :)

Play any video games?

I play all sorts! ^{^}