The official channel for the Brittle Bone Society UK. A place to find out more about the osteogenesis imperfecta and how we help people affected by it, as well as our events and conferences.
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 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 😢.
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 <3 Edit: typing
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 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.
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
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 😤
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.
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 :)
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
It is a shame she starts by calling us sufferers! This is mainly information which is easy to find yourself. What would be really helpful is to understand how much our size affects what we should be eating and how relevant BMI is for us. I am 4ft4 and obese according to BMI... I am a bit overweight, but do not think I am obese. It would be really helpful to get some reliable information on this as it is very hard to find online and a bit of advice on how to lose weight safely.
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.
Thankyou so much to you all for what you are doing, I am 53 and have OI, which was only diagnosed after my son was born age 23. Growing up I was always in pain and spraining and twisting things and was classed as clumsy, but thanks to you guys over the years I realise I wasn't clumsy and my body let me down. So thanks again all involved, keep up your amazing work and hopefully one day you will find a cure. Best wishes Claire
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
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
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 :)
Hello Good day. Am a nurse from Ghana. I have a patient am currently managing who has been diagnosed with OI. Treatment in Ghana is very slow and is causing more complications to my patient. Please is there any one here who can help my patient recieve treatment outside? Thank you
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!
She wasn't so "beautiful" when she was on the undateables and treated her date like crap cos he had a disability!! How dare she, here's someone who has a disability that wants a six ft policeman, sorry to say penny but this ain't gonna happen. You treated that lovely guy like carp and instead of seeing him and his personality, you just saw that he was in a wheelchair!! You're going to end up a lonely old woman with that attitude. You came across so stuck up as if you were a 10 in the looks dept but this is probably because her parents and friends have said she can have any guy she wants and then for her to say she didn't want to date someone with a disability, I was so angry. How would she feel if a good looking 6ft policeman said that to her!!!
i have OI i have type five its a strugel everyday and when im at school i get to skip the dinner que bc i cant stand for a long time and i get to leave my lesson 5 mins early and i got in a fight with my bf bc he didnt understand when im aloud he says im lucky but in my head i just want to say to him when will u understand that i need these things and actually support me and come to a point where you understand. OI is a very hard condition to live with because its invisible the ONLY time ts visible (kind of) is when u have cant on
Mam my baby is osteogenesis imperfecta skeletal displasia.first trimester of the pregnancy test report all is low risk baby is healthy&normal.2ndtrimester scan results asked my baby is affected&terminate baby Duvadilan10mg,nifedephin,carinator,faciloc40,duphastan,ecosprin,acucal,livogen,atoz,...I take this medicines continusly.any side effects of medicine affected to baby for this condition.pls pls ask Mam.ifeel so sad.
I have oi and i need a wheel chair. But i dont have any consultation to choose what type of wheelchair is the best for my needs. Please guide me. I am from india
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