Osteogenesis Imperfecta Support Group

Osteogenesis imperfecta is a group of genetic bone disorders. It is one of the brittle bone diseases. People with OI either have less collagen than normal or the quality is poorer than normal. As collagen is an important protein in bone structure this impairment causes those with the condition to have weak or fragile bones.

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  • deleted_user

    3 month old possible OI

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    Not really sure where to start. My baby is 3 months old and is being tested for OI. He was born 6 weeks premature. We have to possibly find this out the hard way. Two weeks ago I noticed he wasn't moving his arm right, I called the doctor right away, they said bring him in. Doctor said he didn't think anything was wrong but sent us for an x-ray to be safe. X-rays showed healing fractures of the...
  • deleted_user

    So much pain in the Thoracic HELP!!!!

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    Sorry if this posts twice! It didn't show up so I am posting it again. Okay I've typed this a lot in a lot of groups and have yet to find anyone that can relate to me and I'm praying I don't run into another wall here. So here goes...Okay about a year ago I started having sudden severe sharp pain that started in my neck. It felt like I was pulling something or straining something. Well it did...
  • deleted_user

    OI Diagnosed Mild - Active Teenager

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    My son, 15, was recently diagnosed with OI he had 5 breaks that were related to trauma. He is very active and is playing hockey. The doctors said he has a very rare form of OI that is very mild. I am wondering if anyone has experience with such a condition and continues with participating in sports and rec activity. No more motorcycles.
  • deleted_user

    Supporting

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    Hi! I started a Bbm channel for persons with Osteogenesis Imperfecta. If you are interested in joining it would be nice,the pin is C004246E9. looking forward to seeing some of you there. Thanks in advance for the support.
  • deleted_user

    OI Type One and Pregnancy

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    I have Osteogenesis Imperfect type one and I am pregnant with my first child. My OB knows little to nothing about OI and I want to make sure I know everything I need to know to make sure my baby girl gets here safely. I am looking for information and/or suggestions from people who have had a similar experience.As far as I understand it, each child I have has a 50% chance of inheriting OI from...
  • deleted_user

    OI and sex life

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    Hi there,I'm 23 y.o., OI I type, female.Tried to find any information about OI and sex life. Nothing worked, except for family planning and pregnancies. But I am interested more in sex awareness for people with OI.Can anyone share experience of sexual relationships?Really afraid of backpain or injuries during the process. May be some other issues exist?Thanks a lot :)
  • Cypressmoon1

    cat purs

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    http://www.scientificamerican.com/article.cfm?id=why-do-cats-purrScientists have demonstrated that cats produce the purr through intermittent signaling of the laryngeal and diaphragmatic muscles. Cats purr during both inhalation and exhalation with a consistent pattern and frequency between 25 and 150 Hertz. Various investigators have shown that sound frequencies in this range can improve bone...
  • deleted_user

    The depression that comes with OI.

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    I was born in '57. I was diagnosed in '59(2 breaks too close). I got type l. When I was diagnosed there were only 4 types known to medical science. I studied & learned all I could about types l-lV. There are said to be 8 types now. However They may have discovered the version or "knock-off" of the TYPE but have yet discovered the gene that causes them. I gotta tell ya, all I am concerned with is...
  • deleted_user

    My daughter is definitely unique.....

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    She'll be 6 months old next week. She was born with bilateral club feet and Erb's palsy (the nerves in her neck were stretched too far during delivery. She'll never have full use of her right arm, and she has 2 hours of physical therapy exercises/games every day.)As part of her club feet treatment, her father and I have to turn her feet outward and force the top of her feet up until they touch...
  • deleted_user

    Adult getting tested

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    I'm in my early 30s, and currently going through genetic testing for OI. Today my geneticist ruled out ED today which is good, because at first it was suspected I have both. This all came about because I was hospitalized with broken ribs and a pneumothorax. The broken ribs were of unknown origin. I've had at least 20 broken bones in my life, and none of them are for a really good reason. They are...
  • deleted_user

    A.S.A.P

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    Ever wonder about the abbreviation A.S.A.P.? Generally, we think of it in terms of even more hurry and stress in our lives. Maybe if we think of this abbreviation in a different manner, we will begin to find a new way to deal with those rough days along the way. There's work to do, deadlines to meet; You've got no time to spare, But as you hurry and scurry- A.S.A.P. - ALWAYS SAY A PRAYERIn the...
  • deleted_user

    i need intresting information please

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    in school we are working on a project to improve genetic diesase awareness. i decided i would work on oseogenesis imperfecta simply because it is a genetic disorder that is "hidden" and i wanted to make everyone more aware of it. what i mean by hidden is that there are people who have a milder form of this disorder and you may not even know because they appear to be normal just like the rest of...
  • deleted_user

    People don't understand.

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    Being 24 years old and looking perfectly normal to the untrained eye..I find it is extremely difficult to get people to understand what I am going through. especially at work. I do a very physical job, one that I probably should not be doing with my condition. I am a manager at a largely successful convience store/gas station. On truck nights, and sometimes regular nights, I do a lot of heavy...
  • deleted_user

    Friends

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    hi, i have had OI since i was born and it has made me shy. i was just wondering how i can make friends if im different than everyone?
  • HI everyone I am new to the group my husband has OI he has 50+ fracture since birth this is his first fracture in 22yrs. It happened on Friday shatter Tib and severe fracture of Fib, the bone broke through the skin. We were at the dog park with our Son (conceived using a donor to avoid disease) he saw everything :( Surgery went well though and he is home now. This is all new to me as he hasn't...