Sunday, July 19, 2009


I wasn't diagnosed with Osteogenesis Imperfecta at birth or at a young age like most people with OI are. My diagnosis came when I was seven, and it was a clinical diagnosis at that. There was no lab work done or anything. When I went for a second opinion the biopsy and DNA test came back inconclusive. The third opinion said that he was pretty sure I had it and I was better off going with that diagnosis since I would never have a true diagnosis of anything. Since OI is a genetic disorder we were always curious if I really did have it and if so, from which side of the family. Tonight I discovered that my four year old cousin has it. On the upside it reconfirms my diagnosis, on the downside it means one more person who has to deal with all the pain and suffering that I have dealt with. And for that I wish that I didn't have a more conclusive diagnosis.


  1. I am so sorry to hear about your 4 year old and you. I hope the best for you and your family.

  2. that's really hard. i cant imagine what you go through. i only have fibro and i'm struggling with just that. and i'm older than you.
    trying to keep a positive attitude every day is the hardest but that's the only way.
    i'm Leda from Greece