I have OI Type1 as well, but I'm much older than you. It has slowly destroyed my life. There are many things you will learn and need to learn (many the hard way) as you go through life with this. I can offer some advice/experiences/insights to help spare you from at least some unnecessary suffering, if you want. There are very few people dedicated to researching or understanding OI as it's rare and without much in the way of funding. Few doctors (regardless of so-called "specialty" are knowledgeable or helpful beyond anything but basic OI stuff (like casting a bone, fixing an ear, etc). Researchers have little to offer adults with OI and know next to nothing about menopause-related changes to OI. That's where I'm at. Docs are clueless, the disease is progressing, and I'm falling apart. Please know that OI is at its worst from birth until puberty, at which point it pretty much stabilizes. But then it all starts to go downhill once normal, age-related hormonal changes begin (late 30's or so), and it just gets a little bit worse as you age and each year goes by.
Anyway, I'm curious if your hair and/or nails are perfectly normal/healthy, or if your hair is a bit dry/brittle (long hair rubs against back of shirt/sweater and splits/breaks easily, resulting in serious tangles if hair isn't kept up and off from rubbing on the shirt) or if your fingernails are a bit brittle and composed of thin layers/sheets, or are maybe see-through when wet, and/or more flexible (easy to bend instead of hard)?
Yovero1 karma
I have OI Type1 as well, but I'm much older than you. It has slowly destroyed my life. There are many things you will learn and need to learn (many the hard way) as you go through life with this. I can offer some advice/experiences/insights to help spare you from at least some unnecessary suffering, if you want. There are very few people dedicated to researching or understanding OI as it's rare and without much in the way of funding. Few doctors (regardless of so-called "specialty" are knowledgeable or helpful beyond anything but basic OI stuff (like casting a bone, fixing an ear, etc). Researchers have little to offer adults with OI and know next to nothing about menopause-related changes to OI. That's where I'm at. Docs are clueless, the disease is progressing, and I'm falling apart. Please know that OI is at its worst from birth until puberty, at which point it pretty much stabilizes. But then it all starts to go downhill once normal, age-related hormonal changes begin (late 30's or so), and it just gets a little bit worse as you age and each year goes by.
Anyway, I'm curious if your hair and/or nails are perfectly normal/healthy, or if your hair is a bit dry/brittle (long hair rubs against back of shirt/sweater and splits/breaks easily, resulting in serious tangles if hair isn't kept up and off from rubbing on the shirt) or if your fingernails are a bit brittle and composed of thin layers/sheets, or are maybe see-through when wet, and/or more flexible (easy to bend instead of hard)?
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