The Reality Of Living With OI
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- Опубліковано 7 лют 2025
- Hi! My name is Stephanie and this is my UA-cam channel Unbreakable Beauty. I was born with a rare bone disease called Osteogenesis Imperfecta also known as OI or Brittle Bones. I thought it would be cool to give the world a glimpse of my crazy chaotic life. So if you like all things Jesus, makeup, fashion, dogs, food and just plain ol’ laughing and having a good time. Be sure to subscribe to my channel. Welcome to my world. Thanks for watching.
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@thelovelystef
I am going through the same thing.....getting older with this disease is very scary..... I feel like I missed out on my twenties because of it.... I’m not toatally limited but have to literally watch every step and move I make
I’d like to connect on fb if you’d like
Hi! Praying all is well. Thank you for your comment.I’m not a huge Facebook user but we can definitely connect on twitter if you’d like. 😊
Oh honey, It has nothing to do with aging and OI. I know as I write this message to you it has been a little over 1 year since you posted, but I sincerely pray that this message reaches you. I am about to turn 34 in two weeks (born in 1985), and I have OI, actually I have family members with OI. But that pain you speak of in your video, I have lived it and it has gone away. Unfortunately, this does require for one to become somewhat of a medical connoisseur! In 1989, my 6th fracture was of the left tibia; a telescopic rod was inserted that was meant to stretch out as I grew... i vaguely recall overhearing a doctor tell one of my parent in my early teens, something about the screws coming loose and the head of the rod ("nail") being misplaced, but that nothing would be done unless it became painful. Fast forward to 2014, after picking up a new activity, I started having a mild pain, I had felt this type of pain before and usually with 2-3 days rest it went away, this time it was increasing on a daily basis. After a week, it started waking me up in the middle of the night and preventing me from sleeping. It had been 20 years since I had seen a orthopedic doctor, so as an adult I had no doctor to turn to. Nonetheless, I went to the emergency room, an requested a orthopedist that had experience with OI. An x-ray was not sufficient, a CT was required... Turned out that the lower part of the rod, the head of the nail, was piercing through my tibia. From the ER I was to await 1 month before my appointment with the orthopedic surgeon to discuss a plan. During this time, I requested from the children hospital my medical file, read the surgical report, learnt what type of rod was used, did online research to find out about others that had similar side affect with such medical equipment... to be honest, even if roding is a common practice with OI fractures, I could not find anything specific. I did come across reports of athletes having these type of rod, and often between 6 months to 3 years they had been removed... I've had this rod in me for 20 years!! Finally when I sat down with the orthopedic surgeon, the 1st thing she said was that she couldn't remove it, because the upper head of the rod was too deep or something that she would have to break the bone to remove it. She prescribed a special orthesis that would help reduce the wait on the bone, so at least I could have some relief. But I was not ready to live with the pain or to be hooked on narcotic that don't relieve the pain, simply numbs me out to a state of indifference! I suggest to my doctor, since it was a telescopic rod (basically same concept as a curtain rod) that she removed only have the rod! After a few second of being shocked of the absurdity, I mean as far as I know no one has ever removed only half a rod, she agreed and was extremely excited as it was a 1 hour operation she could do as an outpatient procedure! So girl, do not loose hope! Do not listen to people blaming there ignorance, pride or ego as an excuse to blame "your disease"!
Thank you so much. I know I haven’t posted a video in ages but I’m always online watching videos lol. Your message has definitely brought a huge smile on my face today. I’m thinking it sitting down and making an update video on my situation. A lot has happened over the last year. Just know it’s all good news :) thanks for the encouragement. God bless you and your family :)