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

Comments: 130 • Responses: 41  • Date: 

heyitsEnricoPallazzo135 karma

Is your only regret that you have Boneitis?

vlTNTlv61 karma


Scottler19 karma

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.)

vlTNTlv31 karma

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.

Scottler2 karma

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

vlTNTlv4 karma

Thanks for entertaining me during my recovery!

carcerus1 karma

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.

vlTNTlv2 karma

Yeah a certain time can yield heart problems :/

carcerus1 karma

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?

vlTNTlv2 karma

It goes out then immediately back in actually.

carcerus1 karma

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?

vlTNTlv2 karma

The kneecap just went somewhere it shouldn't.

MerrilyContrary16 karma

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.

vlTNTlv6 karma

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.

zombi2271 karma

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

vlTNTlv3 karma

Ours was a lady

shibbster12 karma

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

vlTNTlv28 karma

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.

Ghostkirk14 karma

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.

vlTNTlv4 karma

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

shibbster2 karma

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

vlTNTlv9 karma

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 :)

outtsider6 karma

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

vlTNTlv1 karma

Not familiar, idk

veritasviriditas6 karma

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.

vlTNTlv4 karma

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?

veritasviriditas1 karma

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

vlTNTlv2 karma

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

rymdensregent4 karma

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

vlTNTlv3 karma

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.

reaganpiper3 karma

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.

vlTNTlv2 karma

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.

reaganpiper2 karma

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!

vlTNTlv2 karma

Thanks, really means a lot!

ValentinPearce3 karma

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 !

vlTNTlv5 karma

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.

perksoftaylor1 karma

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 )

vlTNTlv3 karma

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

Boroflow2 karma

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.

vlTNTlv2 karma

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.

N8theGr82 karma


vlTNTlv5 karma

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

NeverEnoughShelves2 karma

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?

vlTNTlv2 karma

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.

NeverEnoughShelves1 karma

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?

vlTNTlv2 karma

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

NeverEnoughShelves1 karma

Wow! How much recovery time did you avoid?

vlTNTlv1 karma

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.

dfw7232 karma

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

vlTNTlv1 karma

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.

artistickitty1 karma

how has EDS effected your life?

what's your favorite movie?

vlTNTlv1 karma

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!

igotbannedonneopets1 karma

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?

vlTNTlv1 karma

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.

black_brotha1 karma

are you aware of this young lady?

she's doing a lot of advocacy about EDS


vlTNTlv1 karma

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

macscheid1 karma

Did they used allograft for the mpfl reconstruction?

vlTNTlv1 karma

Yep, they used a donor hamstring.

RagazzaMatta1 karma

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

vlTNTlv1 karma

Thanks! Same for you :)

YOUNGaz1 karma

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

vlTNTlv1 karma

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

blueskydiver76-1 karma

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.

vlTNTlv1 karma

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.

JermaineColeslaw1 karma

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

vlTNTlv1 karma

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.

14th_Eagle1 karma

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?

vlTNTlv1 karma

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

14th_Eagle1 karma

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.

vlTNTlv1 karma

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

Becca_2421 karma

What does the surgery do?

vlTNTlv2 karma

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

ColombiasFinest1 karma

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!

vlTNTlv1 karma

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

Raptor_Jesus_IRL1 karma

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

vlTNTlv3 karma

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.

Raptor_Jesus_IRL2 karma

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

To each his own.

vlTNTlv1 karma

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.

bahenbihen691 karma

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.

vlTNTlv2 karma

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.

nevetsc1 karma

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

vlTNTlv1 karma

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