i'm 18, roughly 5 foot and suffer from either a severe form of type I or a mild form of type II..the doctors aren't 100 % sure which category i fall under. as far as my family and i are aware of, nobody in my family carries the gene-i'm a mutent -.-
i've had around 60 breaks/fractures.
do you receive treatment for your bones? i get pamidronate and wouldn't be able to survive without it.
I don't know what type I have, 2 I think :S I'm 18, and have had over 25 surgeries (lost count of them :P). I'm in a wheelchair now, don't have much hope to start walking again though... Me and my twin brother has this disease, and my dad and his mom has it too. I think this disease is really interesting, I had a big projekt in school about it and everyone loved it x))
im 13 and have broken my legs about 17 times, im 3.7 and i have a bone on my nee that sticks out, i look alot like the guy off the middle, and my teath are kinda seethrough, i also have type 3, i have a wheel chair and also cruches, i have spend alot of time in hospital, i used to have barreld ribs but now i have abs :) my mum also has oi to...
I don't see a single bad comment on here- I think I just regained my faith in Youtube. I play sled hockey (hockey for people with physical disabilities) with a guy with OI- hes even a two time paralympian. Awesome video =)
my twin sister has OI type 7 and she has fractured 48 bones in her life time. She has scolosis and click hip. She uses a wheelchair and braces on her legs to stopp her from breaking as much. Thank you for doing this video it helps a lot and brings awareness to OI
I also have type one, and I'm 20 years old. I'm 5'8" and have broken 22 bones since I was born. Don't have DI either. Thanks for making this short and sweet video about the disease.
hello! i also have what is now Type 1, but used to be Type 4. They keep changing the system. I've had 10 fractures from age 3-14, and haven't had a fracture in 10 years. I'm double-jointed as well, most people either think it's really cool or really gross. I'm almost 5'6", the tallest of the women in my family. My sclera are really blue. Do yours change with the weather too? or when you're sick? My Grandfather, Great Aunt, Mother, Sister and 2 Aunts have OI. Thanks for the vid. DFTBA!
@75gldy I don't think any of my family members have it, and the reason why I don't think I have OI is because a couple months ago I went roller blading and I fell, I ended of springing my wrists, and I thought if I did have OI my bones would of broken from the fall. Soooo, I am not sure my mom is going to take me to a docter though, but also when you were talking about the spot where if you get hit too hard you could die , well I have some pain in the middle of my chest but IDK what that means.
Olá! Sou brasileiro, tenho 30 anos, tenho OI (osteogenese imperfect).Existem vários níveis dessa doença genética, tenho o mais leve,porém só ando de cadeira de rodas,não tive atrofias nos membros superiores nem inferiores. Executo quase todo tipo de atividade, no dia a dia.
Great video, I have OI type IV, I have had about 25-30 breaks in my lifetime. No one else in my family has it, though and I didn't meet other people with it until I was in my twenties, I'm 41 now. Keep up the good work on getting the word out. It's wonderful to see other people with OI on the web, sharing their stories. Take care!
This is a great video. It's nice to read these comments too...makes me realise I'm not the only person on the planet who understands what it's like to live with this condition. Me and my brother have OI, and one positive that has come out of living with it, is our artistic creativity. I make short films (currently amateur) and my bro is a professional painter. I may never play football or ride a bike, but I've had my film played at Cannes which is something I'm very proud of! So dare to dream!!
Thank you for posting, it reminds Me that I'm not alone :) I'm also sporting a titanium plate in My left forearm cuz of a slip & fall I had (Collies fracture). I HATE having to worry about walking, I hate dreading stairs, I hate being unable to play some sports while My friends enjoy. My mother has it, My grandmother has it. I haven't broken as much as they, I was warned.
I didn't break any bones being born c-section. I believe I have type 4. I'm 5'3 and 1/2, have scoliosis, short torso, blue-gray sclera, really long limbs, and have broken over 30 bones despite still being in My 20's. I'm "double jointed"...unusually flexible. I hate that when some others have accidents that they can walk away from and laugh... but I end up with broken bones. SUCKS!
Many medical professionals are ignorant of Our condition and can't treat us properly if we get hurt.
@glamkitten24 A dear friend of mine and his mother have this. Also, my sister has Marfan Syndrome, which has a lot of the characteristics you mention, like long limbs, flexibility, double jointed and scoliosis -- I have scoliosis myself, but not due to Marfan Syndrome. Maybe you also have another condition? BUT, you are right, not everyone understands that condition and some are even afraid to treat people with it for fear of doing more damage.. its crazy.
hi my names kenesha my son has oi type1 i have no clue where it comes from. I dnt have it neither does anyone an my family, although i have done some research myself my son takes a medicine by da name of pamidrate but he has broken over 5bones an he's 4yrs but he acts like a normal child that i have to keep my eye on. Take care of yourself maybe one they it be a cure for this very rare disease.
I have type 1. Wolfs law" is something I accidentally discovered .... I do not recommend this to anyone as it has been my choice to experiment...I have been a martial artist for 10 years and have very strong arm and leg bones from body conditioning, wolfs law basically states that bones will remodel based on the load that it is placed under. I had broken many bones whilst growing up, but not one since I have worked hard on bone conditioning. This is an area that doctors surely must have consi
I have all those I was diagnosed at a young age I'm very short lazy eyes arms stick out broken bones before alot it's very hard I messed up my foot by stepping wrong!
i have oi type 1. i was diagnose when i was luke 4 in Mexico n the dr told my mom i wasnt goin to be able to walk or do anything. and look at me now am 28 abd am great. yes broke my wrist like 6 times, my arm once, which needed surgery n a metal place to be put in place, a broken femur and ankle at the same time, a broken ankle again. and my spine well not well. but i dont let this stop me from doing things.
i was only diagons at th16 , im type 4 i had a blue scleras then it was white and now its gray i broke my spine 2 time they think one was when i was in high school the other they think it was when i was still in my mum stomic . there is ways over mange it but its in my DNA it made me who i am today, i have chosen that when i have child i will have the eggs test to make sure my children don't have oi this is done though genetic testing.
This vid is amazing! I have type 3. Maybe up to 1000 fractures and most typical type 3 symptoms. Look up my videos if you have time. Would luv to chat with you more. You gave a lot of great info here. Not used to seeing young folks w/ as much passion about finding a cure. I applaud you! I'm putting this link up on Face Book. If you're on FaceBook, look up Rebecca Thames. Maybe you could join our OI group.
I have a mild case of OI i hav broken at least maybe 7 bones ive broken both of my arms and legs before i dnt really tell people at school other than my best friend the white of my eyes are almost always blue (some people at school point it out) ive never really felt different but, my mom is never to sure so i dnt participate in that many physical sports, my dad also hasOI but he ddnt find out till he was in his 20's he is also losing his hearing
It affected him in the sense he broke bones more often and had the blue sclera, his wrists were a little more bony than most people to poke out a little, etc, but I was the only one who ever noticed these things - otherwise you'd never know, he walked with no problems..he was premature but was tiny until later. ..a person hit him in a car wreck in april & his entire left side was broken, he didnt make it :'( it broke my heart & we wonder if that played a part. but, he was the strongest i know<3
I had a very very close friend of mine, my best friend who I dated a long time & then, got back with him after a while.. who had this. he was also my brother in law's first cousin.. I remember he never wanted people to treat him different or like he was fragile or less or use it as an excuse, so he refused to tell anyone about it besides his family who knew and me. I was the only person besides family he told. I know I never treated him any different. I did pay attention to watch out for him...
I have this too i have the most mildest case i have broke my femur bone 6 times but i haven't broke any other bones i still walk normal just have a little limp.I am tall for my age im 16, male, i do have a hearing loss i wear a hearing aid in my left ear but im getting surgery that will help me hear normal if not better. I still go hunting, exercise and other stuff every one else does. Right now im going to Nashville Tennessee to try to get on the radio i play guitar me and my band cant wait!
@jefferygibsonsg it's nice to meet you:) I'm 15 & I'm exactly 5". I limp a little too sometimes. & im starting to go deaf:( & good luck to u & the band:)
Dear 75gldy..it is weird..yes i do have the blueish haze in the whites of my eyes, and no i was not born with any broken bones..i do have the mild type so in a way i understand why they missed it..however broken bones every year growing up should have raised some alerts...im trying to deal with it the best i can..thank you for responding please i would like to know more about you..okay..im in san diego california...ttyl..Sean
Hey baby my son has type 3 oi and he is 8 years old, he has had rods, and has had multiple fractors and he has a peigon chest also known as barrel chest, Skyy can't walk so he sits on his skateboard to get around. Skyy is so smart and is 36 inches and his dad has it to he is 3'9 and his grandpa had it and great grandpa. My son brake when the weather changes and his bones hurt all the time. I am 5'4 so we are a odd couple. please email me at karijeanurrutia@yahoo.com we live in edinburg,tx
I have OI too, im a 41 year old hispanic male, i did not know i had it, i served in the army, played football and baseball..drs said i was just active until i slipped outside costco and broke my right femur and right shoulder...i have the mild type but still have broken some 30 plus bones..anyone else with this disease wants to chat with me i would really like that...email me at seancharger69@gmail.com...thanks have a great day..Sean from San Diego
hep i have O.I. to. Im 16 i have broken my legs 27 and my hands 4 time and i dont count toes and finger hehee :P i was dignosed when i was 4 years old. The only thing that would be great to meet more people with O.I. :) ;P
Hey just wanted to say it's good you're putting up a vid to get the word out. Hope all is well, oh and as for the exercise sport bit at the end.......SWIMMING! psh I'm in love with it.
..why someone disliked? :/
laurux95 1 month ago
@laurux95 Probably because it wasn't good enough for them. Since yanno, I was only 14!
75gldy 1 month ago
This has been flagged as spam show
i'm 18, roughly 5 foot and suffer from either a severe form of type I or a mild form of type II..the doctors aren't 100 % sure which category i fall under. as far as my family and i are aware of, nobody in my family carries the gene-i'm a mutent -.-
i've had around 60 breaks/fractures.
do you receive treatment for your bones? i get pamidronate and wouldn't be able to survive without it.
i too suffer from the blue scleras.
feel free to add me on on facebook guys -
claudette camille day
Cla900 2 months ago
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Cla900 2 months ago
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Cla900 2 months ago
i have it too im her sister
2100asking 3 months ago
I have type 1. Cool to know I've found someone around my age with OI.
CageTheDervish 3 months ago
I don't know what type I have, 2 I think :S I'm 18, and have had over 25 surgeries (lost count of them :P). I'm in a wheelchair now, don't have much hope to start walking again though... Me and my twin brother has this disease, and my dad and his mom has it too. I think this disease is really interesting, I had a big projekt in school about it and everyone loved it x))
Eucis93 3 months ago
im 13 and have broken my legs about 17 times, im 3.7 and i have a bone on my nee that sticks out, i look alot like the guy off the middle, and my teath are kinda seethrough, i also have type 3, i have a wheel chair and also cruches, i have spend alot of time in hospital, i used to have barreld ribs but now i have abs :) my mum also has oi to...
elementbambaby123 3 months ago
I don't see a single bad comment on here- I think I just regained my faith in Youtube. I play sled hockey (hockey for people with physical disabilities) with a guy with OI- hes even a two time paralympian. Awesome video =)
wheelchairby284 5 months ago
This has been flagged as spam show
my twin sister has OI type 7 and she has fractured 48 bones in her life time. She has scolosis and click hip. She uses a wheelchair and braces on her legs to stopp her from breaking as much. Thank you for doing this video it helps a lot and brings awareness to OI
Elly111Ellyaum 5 months ago
Comment removed
Elly111Ellyaum 5 months ago
I also have type one, and I'm 20 years old. I'm 5'8" and have broken 22 bones since I was born. Don't have DI either. Thanks for making this short and sweet video about the disease.
saraheatzombie 5 months ago
hello! i also have what is now Type 1, but used to be Type 4. They keep changing the system. I've had 10 fractures from age 3-14, and haven't had a fracture in 10 years. I'm double-jointed as well, most people either think it's really cool or really gross. I'm almost 5'6", the tallest of the women in my family. My sclera are really blue. Do yours change with the weather too? or when you're sick? My Grandfather, Great Aunt, Mother, Sister and 2 Aunts have OI. Thanks for the vid. DFTBA!
dramadork787 5 months ago
I have the blue eye in the white part but my bones are bot messed up what could this be?
SpiritsMoon1129 5 months ago
@SpiritsMoon1129 Perhaps you are a carrier, or you have a veeeery mild case and don't break as easily? does anyone else in your family have it?
75gldy 5 months ago
@75gldy I don't think any of my family members have it, and the reason why I don't think I have OI is because a couple months ago I went roller blading and I fell, I ended of springing my wrists, and I thought if I did have OI my bones would of broken from the fall. Soooo, I am not sure my mom is going to take me to a docter though, but also when you were talking about the spot where if you get hit too hard you could die , well I have some pain in the middle of my chest but IDK what that means.
SpiritsMoon1129 5 months ago
Olá! Sou brasileiro, tenho 30 anos, tenho OI (osteogenese imperfect).Existem vários níveis dessa doença genética, tenho o mais leve,porém só ando de cadeira de rodas,não tive atrofias nos membros superiores nem inferiores. Executo quase todo tipo de atividade, no dia a dia.
Thanks !
byWKR7 5 months ago
Great video, I have OI type IV, I have had about 25-30 breaks in my lifetime. No one else in my family has it, though and I didn't meet other people with it until I was in my twenties, I'm 41 now. Keep up the good work on getting the word out. It's wonderful to see other people with OI on the web, sharing their stories. Take care!
Irlandagitana 5 months ago
Aww may god bless u nd ur family hun
toyanicc04 6 months ago
This is a great video. It's nice to read these comments too...makes me realise I'm not the only person on the planet who understands what it's like to live with this condition. Me and my brother have OI, and one positive that has come out of living with it, is our artistic creativity. I make short films (currently amateur) and my bro is a professional painter. I may never play football or ride a bike, but I've had my film played at Cannes which is something I'm very proud of! So dare to dream!!
ourdistinctfilms 6 months ago
Thank you for posting, it reminds Me that I'm not alone :) I'm also sporting a titanium plate in My left forearm cuz of a slip & fall I had (Collies fracture). I HATE having to worry about walking, I hate dreading stairs, I hate being unable to play some sports while My friends enjoy. My mother has it, My grandmother has it. I haven't broken as much as they, I was warned.
glamkitten24 6 months ago
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glamkitten24 6 months ago
I didn't break any bones being born c-section. I believe I have type 4. I'm 5'3 and 1/2, have scoliosis, short torso, blue-gray sclera, really long limbs, and have broken over 30 bones despite still being in My 20's. I'm "double jointed"...unusually flexible. I hate that when some others have accidents that they can walk away from and laugh... but I end up with broken bones. SUCKS!
Many medical professionals are ignorant of Our condition and can't treat us properly if we get hurt.
glamkitten24 6 months ago
@glamkitten24 A dear friend of mine and his mother have this. Also, my sister has Marfan Syndrome, which has a lot of the characteristics you mention, like long limbs, flexibility, double jointed and scoliosis -- I have scoliosis myself, but not due to Marfan Syndrome. Maybe you also have another condition? BUT, you are right, not everyone understands that condition and some are even afraid to treat people with it for fear of doing more damage.. its crazy.
kcld54 5 months ago
ive read hande with care by jodi picoult its amazing
hinamoriamulover 7 months ago
u go girl i dont have the disease but u r just rockin it thanks for sharing with us
MaddiMc100 7 months ago
hi my names kenesha my son has oi type1 i have no clue where it comes from. I dnt have it neither does anyone an my family, although i have done some research myself my son takes a medicine by da name of pamidrate but he has broken over 5bones an he's 4yrs but he acts like a normal child that i have to keep my eye on. Take care of yourself maybe one they it be a cure for this very rare disease.
shaneapeoples 7 months ago
I don't have this disease but this video is very moving. You go girl, spread the word people!!!
JJJUBFFS 7 months ago
I have type 1. Wolfs law" is something I accidentally discovered .... I do not recommend this to anyone as it has been my choice to experiment...I have been a martial artist for 10 years and have very strong arm and leg bones from body conditioning, wolfs law basically states that bones will remodel based on the load that it is placed under. I had broken many bones whilst growing up, but not one since I have worked hard on bone conditioning. This is an area that doctors surely must have consi
patrino 8 months ago
Hi, my name is Mark. I live in Kansas I have OI and have Type 1.
MissSarahXScene 8 months ago
I have all those I was diagnosed at a young age I'm very short lazy eyes arms stick out broken bones before alot it's very hard I messed up my foot by stepping wrong!
TheSaramckenzie 10 months ago
i have oi type 1. i was diagnose when i was luke 4 in Mexico n the dr told my mom i wasnt goin to be able to walk or do anything. and look at me now am 28 abd am great. yes broke my wrist like 6 times, my arm once, which needed surgery n a metal place to be put in place, a broken femur and ankle at the same time, a broken ankle again. and my spine well not well. but i dont let this stop me from doing things.
wegirl07 11 months ago
I'm 19 and I have this. My entire life. I've never found anyone else, this is incredible.
lovexless 11 months ago
@lovexless
...internet??
rantanen1 10 months ago
i was only diagons at th16 , im type 4 i had a blue scleras then it was white and now its gray i broke my spine 2 time they think one was when i was in high school the other they think it was when i was still in my mum stomic . there is ways over mange it but its in my DNA it made me who i am today, i have chosen that when i have child i will have the eggs test to make sure my children don't have oi this is done though genetic testing.
slatterysarah1 11 months ago
This vid is amazing! I have type 3. Maybe up to 1000 fractures and most typical type 3 symptoms. Look up my videos if you have time. Would luv to chat with you more. You gave a lot of great info here. Not used to seeing young folks w/ as much passion about finding a cure. I applaud you! I'm putting this link up on Face Book. If you're on FaceBook, look up Rebecca Thames. Maybe you could join our OI group.
jcslight 1 year ago
@jcslight
i'll be sure to add you on facebook!
my name is claudette camille day
Cla900 2 months ago
I have a mild case of OI i hav broken at least maybe 7 bones ive broken both of my arms and legs before i dnt really tell people at school other than my best friend the white of my eyes are almost always blue (some people at school point it out) ive never really felt different but, my mom is never to sure so i dnt participate in that many physical sports, my dad also hasOI but he ddnt find out till he was in his 20's he is also losing his hearing
candy5422 1 year ago
It affected him in the sense he broke bones more often and had the blue sclera, his wrists were a little more bony than most people to poke out a little, etc, but I was the only one who ever noticed these things - otherwise you'd never know, he walked with no problems..he was premature but was tiny until later. ..a person hit him in a car wreck in april & his entire left side was broken, he didnt make it :'( it broke my heart & we wonder if that played a part. but, he was the strongest i know<3
kcld54 1 year ago
@kcld54 He didn't!? NOOOO!!!!!!! Now I'm DEFFINATELY NOT watching it!!!
75gldy 1 year ago
This has been flagged as spam show
@75gldy Not watching what?
kcld54 1 year ago
I had a very very close friend of mine, my best friend who I dated a long time & then, got back with him after a while.. who had this. he was also my brother in law's first cousin.. I remember he never wanted people to treat him different or like he was fragile or less or use it as an excuse, so he refused to tell anyone about it besides his family who knew and me. I was the only person besides family he told. I know I never treated him any different. I did pay attention to watch out for him...
kcld54 1 year ago
I have this too i have the most mildest case i have broke my femur bone 6 times but i haven't broke any other bones i still walk normal just have a little limp.I am tall for my age im 16, male, i do have a hearing loss i wear a hearing aid in my left ear but im getting surgery that will help me hear normal if not better. I still go hunting, exercise and other stuff every one else does. Right now im going to Nashville Tennessee to try to get on the radio i play guitar me and my band cant wait!
jefferygibsonsg 1 year ago
@jefferygibsonsg it's nice to meet you:) I'm 15 & I'm exactly 5". I limp a little too sometimes. & im starting to go deaf:( & good luck to u & the band:)
75gldy 1 year ago
Oi... também tenho O.I
Sou do Brasil... tenho 19 anos.
mandinhasarmento 1 year ago
I have OI also!!
KrazynKute 1 year ago
Dear 75gldy..it is weird..yes i do have the blueish haze in the whites of my eyes, and no i was not born with any broken bones..i do have the mild type so in a way i understand why they missed it..however broken bones every year growing up should have raised some alerts...im trying to deal with it the best i can..thank you for responding please i would like to know more about you..okay..im in san diego california...ttyl..Sean
seanjohn19691987 1 year ago
Hey baby my son has type 3 oi and he is 8 years old, he has had rods, and has had multiple fractors and he has a peigon chest also known as barrel chest, Skyy can't walk so he sits on his skateboard to get around. Skyy is so smart and is 36 inches and his dad has it to he is 3'9 and his grandpa had it and great grandpa. My son brake when the weather changes and his bones hurt all the time. I am 5'4 so we are a odd couple. please email me at karijeanurrutia@yahoo.com we live in edinburg,tx
karijeanurrutia 1 year ago
@karijeanurrutia I have a small bone that sticks out of my chest, but i have a mild type, so im at average hight. i live in Edinburg, Pa:)
75gldy 1 year ago
I have OI too, im a 41 year old hispanic male, i did not know i had it, i served in the army, played football and baseball..drs said i was just active until i slipped outside costco and broke my right femur and right shoulder...i have the mild type but still have broken some 30 plus bones..anyone else with this disease wants to chat with me i would really like that...email me at seancharger69@gmail.com...thanks have a great day..Sean from San Diego
seanjohn19691987 1 year ago
@seanjohn19691987 thats odd... are your scleras blue? also were you born with any broken bones? they shouldve been able to diagnose you at birth
75gldy 1 year ago
Hey I'm Ana, I'm 18 and I have OI, like you.
Nokitax007 1 year ago
Great vid, you certainly know your stuff. I have OI as well but you're so matter-of-fact it inspires me.
KiwiNapoleon 1 year ago
hep i have O.I. to. Im 16 i have broken my legs 27 and my hands 4 time and i dont count toes and finger hehee :P i was dignosed when i was 4 years old. The only thing that would be great to meet more people with O.I. :) ;P
oloficeland 1 year ago
WOW SORRY
suebrose2000 1 year ago
Hey just wanted to say it's good you're putting up a vid to get the word out. Hope all is well, oh and as for the exercise sport bit at the end.......SWIMMING! psh I'm in love with it.
TitaniumWheels 1 year ago