Osteogenesis Imperfecta / Brittle Bone Disease

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Osteogenesis Imperfecta / Brittle Bone Disease
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    Kissimmee Florida area, is there anyone here that has Osteogenesis Imperfecta? I feel so alone with this disease. I’ve had 102 fractures to date.

    #OsteogenesisImperfecta i have screws in my knee and hip. A titanium rod in my femur to hold it together. ive also suffer from hearing loss and have hearing aides now. A few years ago I decided to go with dentures because of the DI. BEST DECISION I EVER MADE. I pray that someone will answer my post so that I can have someone to talk to about the issues around OI. GOD BLESS!!!

    Post

    I'm new here!

    Hi, my name is Ren. I’m new to The Mighty and look forward to sharing my story. I am currently diagnosed with anxiety, depression, gender dysphoria, ADHD, POTS, and I am in the diagnosis process for EDS, ASD, and possible osteogenesis imperfecta. I'm a minor and my pronouns are he/they.

    #MightyTogether

    #Anxiety

    #Depression

    #AutismSpectrumDisorder

    #ADHD

    #EhlersDanlosSyndrome

    #GenderDysphoria

    #Dysautonomia #POTS #osteogenesis

    Question

    Osteogenesis Imperfecta people, are you out there? I feel so alone with this disease. I also suffer from depression.

    #OsteogenesisImperfecta

    Post

    Shower

    I need a shower. But I’m petrified. I know this sounds 😛.
    I live with Osteogenesis Imperfecta, with 102 fractures to date.

    Now I’m sooooooooo scared of falling again and fracturing something.
    I need a shower, but I’m so scared.

    Question

    is there anyone here that also has Osteogenesis Imperfecta? Brittle bone syndrome, or glass bones. ive had 102 fractures to date. i feel so alone.

    #RareDisease

    Question

    Does anyone on here also have Osteogenesis Imperfecta, brittle bone syndrome-glass bones? I’m 57 and have had 102 fractures to date.

    #RareDisease

    Post

    OI Later in life #OsteogenesisImperfecta

    I have a milder form of osteogenesisimperfecta . When I was born I only weighed 2 pounds and all my bones were broken. They were brittle and soft. They did harden by the time I was three and I didn't walk until I was 4 years old. This resulted in me being behind in development and I only grew to be 5 feet tall. I have a fraternal twin that is 6 feet tall sou you can see how my height was an issue. My question is are there anythings I need to watch out for later in life as I am 51. I have had 3 knee surgeries and all my joints seem to pop. Any help would be great.

    Post

    Hi! First post. Osteogenesis Imperfecta One of the milder types. Not good with words. 16 years old.

    #RareDisease