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Mobility Aids, Osteogenesis Imperfecta

Posted by gzezulka @gzezulka, 1 day ago

So, it's looking like the connective tissue disorder that I have is actually Osteogenesis Imperfecta (either Type 1 or Type 4). I have an appointment with a geneticist coming up this next week to get an official diagnosis. (And to hopefully get a refferal to someone to figure out why I am fainting.)

But I'm wondering, who do I bring up mobility aids and braces to? I'm in a lot of pain when I walk in my lower back and my thighs/hips. I'm young, only 24, and I have no idea who I should be talking to about this? How do I even bring it up? I'm really nervous about being taken seriously.

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timely | @timely | 23 hours ago

So, is your Internist aware of this new diagnosis and that you are fainting?

Contact him Monday for the fainting to rule out low blood pressure or low blood sugar. Google to find out if the fainting is related to your connection tissue disorder.
While there, he is the one who can give you a prescription for mobility aids and make sense of who you should see next.

Call the geneticist’s office Monday and ask to talk to a nurse or leave a message for him asking if he is the one who gives a referral to who will treat you.
That way you will know too if the referral should come from the geneticist.
Do you want to take a family member such as your Mom with you to the geneticist appointment?
Make a list of any questions that you have.
If you bring someone, they also have your list of questions and take notes for you. They can ask a question too if something comes up or to clarify information.

Please post how this all turns out for you.

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