I have Osteogenesis imperfecta type 3. I am second generation hopefully the last because I chose not to have my own children. I have lived on my own since I was 18 years old. I will say that as I am getting older the scoliosis of my spine is getting worse and making it hard for me to transfer alone in and out of my wheelchair. Even though I am in America there are several doctors who do not know anything about my birth defect. I feel it is sad that I have to educate the doctors. So all I can say to the younger generations with this Birth defect pay attention to your body and make your voice be heard. Educated adult around you.
@@outsidethecubicle22 yes it is hereditary. That is why I chose at the age of 17 years old not to try to have my own children. It is more common for females to pass on the osteogenesis imperfecta then it is for the males, although it can skip a generation. My father was the only one of eight children to have had this birth defect, neither of his parents had this birth defect. It is only my sister and I my sister has now passed, but she did not have the osteogenesis imperfecta. I don’t know what they teach in medical school. I have a niece who is a nurse and she came to me to learn about things because they did not teach her in nursing school about it either.
I am the first one in my family to have OI because mine is the one that has the genetic mutation. I have OI type 4 and I can walk, which makes me feel incredibly lucky after watching this video. I realize that I always look on the negative of my disease and never on the positive but I'm trying to be better and this video just really helped me 😊
We're really glad you feel better after watching our video. There's plenty of positives to take away, and if you ever need help please reach out to us via our website :)
You don't have to live in a poor country to be poor. I get 800 bucks a month. Yes a month. People think that those on s.s.i. are happy because we don't work? Lmao. I live WAY below the poverty level. And I live in NY which is not a poor country. Also I suffer with mental illness. Living in poverty makes it worse. After rent and phone is paid, I live on nothing for the rest of the month
OI lacks so much awareness. It's so hard to explain to people. I am very lucky to have a mild form or osteogenesis imperfecta. However, it's hard to explain to people that I have OI since it is mild and some people brush it off.
@@wjoelstarling my mom took me when I was little I believe but I would love to connect I need to look it up. Also my mom and I are having some auto immune issues and I’m wondering if anyone else with OI has run into this ive had shingles 25 times!
I have brittle bones to and because I am 9 years old it makes me wonder soooooooooooooooooooooooooooooooooooooooo much more than people in my school about my adulthood and it is scary for me
Hi Clare - there's plenty of reasons to be optimistic about your future, and plenty of people with OI who are living independent and happy lives as an adult. If you want more information you can come to one of our events, like our family conference in Dundee in August where we have special workshops for people your age, or contact us via our website.
I also have OI and I’m 22 and went through the same as you, I know it’s been a long time since this comment and I hope you’ve found yourself a bit more. But if you need someone to talk to about OI or how to deal with it or just life in general, you can contact me whenever
Can we please talk about OI? @@MsTinytot15 I have a grandchild that I believe may have it but he and his siblings was taken away from our family by California CPS . We are heart broken but determined to have things right again. Thank you 💖God bless
@@anjielenoir70s firstly, I’m so sorry that happened to your family, I was almost taken from my family at around 2 because my mum accidentally snapped my shoulder getting my arm in a jacket, and I broke my sternum not long before. I would recommend pushing for genetic testing/blood work or anything your state can offer to try and test for OI and prove that he has it. Obviously with you circumstances it may be difficult to do so but you really have to push for the testing, even as someone still with her family it was hard for the doctors to get confirmatory testing done for me (mainly because they already made a diagnosis, but didn’t actually do any testing to show it properly)
Thanks so much for sharing this story! I just finished filming a video documentary short on Tiffany Manning, a Halloween prop maker and artist who also has Osteogenesis Imperfecta. Her passion and drive to do what she loves is amazing! ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-h55ffhZrEpE.html
Im 12 yo i have sky blue color in my scelera so i do research on it but im normal human, i dont know how to get rid of ot and how i get it. Hope its harmless to me.
Have you ever broken a bone before? I would talk to your parents or doctor about it. It's nothing to be scared of, but it's probably a good idea to find out if it could possibly be OI and how it might affect you. Doesn't be scared though, having OI isn't all bad. I'm 15 and I'm doing good :)
I actually have this. I have type 1-13 but I'm getting retested soon cuz they believe I have type 3-13 It honestly sucks cuz I was never allowed to do anything cuz I break so easily
Seeing these people makes me feel very lucky, I also have O.I. but I got it trough genetic mutation, it affected me a lot when I was younger, both mentally and phisicaly, often times I would break some bones from age 10 to 13, but now, at 19 years old, I went trough terapy and I'm living a normal life, I play football, cycle, hike, etc. My biggest problem now is torn ACL which I got while playing football, good luck to all of you suffering
Yes, I have O.I type 3. I'm 22 yrs old. For me also it affected a lot when I was younger. But after operations it is becoming better to now. I'm trying to swim and exercise more. Nice to meet you. (Maharashtra, India)
I work with a type 4 and its very hard for her to get the help she needs where she lives. Her doctor doesnt listen and is the only one within a 6 hour radius that knows at least 2 things about oi. The healthcare in my area is very poor because the community sucks and people have really mistreated doctors around here so they end up leaving.
Thanks for sharing that! I just finished filming a video documentary short on Tiffany Manning, a Halloween prop maker and artist who also has Osteogenesis Imperfecta. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-h55ffhZrEpE.html
My child baby girl have OI and im living in Iraq , we suffer from the poor In information to treat and improve all OI case , wish someone in this world can help us to join such a community to understand more about who to deal and treat 😢.
I have oi type one it’s very hard not being able to do things I wanna do with the risk of breaking my bones I’ve broke about 7 bones when I was very small I would break my bones a lot It’s good to see a oi awareness video
My doc, don’t tell me my reading, just that I’ve got bittle bone and to take d vitamins when I’m in pain , hard doing stuff when , when your in pai, I’ve broke my arm twice this mth , my docs are shit 😤
I got a novel at Walmart by Jodi picoult handle with care it's about a couple that had a baby with OI. never heard of this before. terrifying and interesting it's important to everyone no matter what health issues one has to have good support system and know people care about you
I wonder if people with OI have to worry about getting too many X-rays. X-rays can cause cancer if done too many times. Do you guys tell whomever your doctor is that you are prone to bone breaks and this bone is "probably broken" so please don't do an x-ray?
I have OI! And yes, I do this frequently. If it's something I fractured and I can tell (and you can tell after breaking and fracturing so many times), I tell the doctor the moment I walk in that I broke something, and explain what I want. Sometimes the doctor trusts me and gets me what I need, but for things like intense painkillers they are required to have official documentation in the form of imaging. Other times if I broke, say, a finger or a rib, I just don't bother going in because there isn't often much they can do, so unless I have a hunch that there needs to be some medical intervention I deal with it on my own. (Dealing with US doctors here.) Unfortunately having many X-rays, MRIs, and CT-scans is a reality for us.
@@Fizzy127YT dang I'm sorry. Hope that it has healed and you are doing ok. Once I tipped back in a hammock and set my hand on the ground and I broke my radius and ulna. I likely have type 6 OI (similar to type 1 I think - mild to moderate)
No, never. I often feel a sort of resentment to my mother and grandmother for choosing to risk passing it onto another person (and they did). The cycle ends with me and I refuse to have children.
The best thing to do is to speak to an appropriately qualified medical professional. As you can see from the chart though the severity scale ranges from mild to severe depending on things like how it affects your growth or your bone fragility.
Brittle Bone UK we have a case who is 3 years old , not walking yet but moving every part of her body , and very intelligent and careful about her case , she was born with 2 broken bones of her legs. The thing is we are living in iraq and there is no specialist of OI case, whoever we have tried everything to get her well , can you plz tell us a way to take her to a country that can care about her case and has a specialist doctor,.. Thank you
