Thank you for sharing your story. I'm a 35 year old with OI. Was diagnosed as Type I, but I believe it may actually be Type IV. Either way I'm fortunate to not be in a wheelchair, but I have dealt with 19 significant fractures throughout my life. You name it. I've probably broken it.
My first question for you is if you believe OI has made you a more compassionate or sensitive person? Do you believe it's made you a better person or friend? I definitely believe it's had that effect on me.
And what is your passion? What's your goal for your future?
I was fortunate to be a successful competitive junior and amateur golfer until having to give up the game four years ago. Still trying to figure out what passion or hobby to replace golf with.
Because of the rarity of the disease it has been impossible to find doctors who have any sense of how to deal with someone like me in terms of long term care. I experience significant joint pain day in and day out. I fear the onset of hearing problems. Fear not being as mobile one day.
Glad to hear you're still very upbeat and have a group of understanding family to lean on because they live with it, too. Thanks again for sharing!
jbthethird61 karma
Thank you for sharing your story. I'm a 35 year old with OI. Was diagnosed as Type I, but I believe it may actually be Type IV. Either way I'm fortunate to not be in a wheelchair, but I have dealt with 19 significant fractures throughout my life. You name it. I've probably broken it.
My first question for you is if you believe OI has made you a more compassionate or sensitive person? Do you believe it's made you a better person or friend? I definitely believe it's had that effect on me.
And what is your passion? What's your goal for your future?
I was fortunate to be a successful competitive junior and amateur golfer until having to give up the game four years ago. Still trying to figure out what passion or hobby to replace golf with.
Because of the rarity of the disease it has been impossible to find doctors who have any sense of how to deal with someone like me in terms of long term care. I experience significant joint pain day in and day out. I fear the onset of hearing problems. Fear not being as mobile one day.
Glad to hear you're still very upbeat and have a group of understanding family to lean on because they live with it, too. Thanks again for sharing!
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