I've been looking for ages about this syndrome but it's very rare especially in females so it is difficult to find anyone to ask about this syndrome.
I was just diagnosed with this at the age of 17/18 years old and have now been living with it for about years (I'm 21 now). I just want to know is there anyone else who has been living with this for longer. And how has this affected you, like have you been able to have children, what about brittle bones, etc.
It would be great to hear from you. Many thanks.
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