There are not a lot of resources out there for people with Osteogenesis Imperfecta, also known as OI, because it is a fairly rare disease. It is only present in 1 out of 20,000 live births in the United States and a prediction on the number of citizens affected is 20,000 to 50,000. I can only presume this number is so broad because many people with the mildest form of OI (I have the second mildest) can remain undiagnosed for a very long time if not indefinitely.
Because of this, the Osteogenesis Imperfecta foundation is really the best, comprehensive source on OI for both the newly diagnosed and those of us in “management” mode. However, because the OI foundation has such a wide variety of material, it might be handy for me to list some of the most relevant site links a newly diagnosed person, or parent of a newly diagnosed person, would find most helpful:
The Home Page of the Osteogenesis Imperfecta Foundation, in case you like to explore on your own.
An information center page at the OI foundation site. This contains links to various relevant OI topics.
About Child Abuse Allegations. If your child was late getting diagnosed with OI, you have probably already been down this road. If you have not, get prepared. My family lived a CPS nightmare for a long time, and you will want to avoid that with everything else you must deal with.
Lots of facts about OI presented in a simple, easy-to-read format.
A break-down of the Types of OI for you to read. This can be particularly handy if you are going to meet-up with others with OI as it allows you to understand how your experiences with the condition are similar and/or different.
Myths about OI. Seriously, next to the child abuse allegations, this page is one that you will want to read the most as your doctor will likely cover many of the other topics with you. You will tell someone that you or your child have a brittle bone disease and 10 to 1 they will try to find a way to cure you or accuse your parents of not giving you enough milk as a child….or not breastfeeding. OI doesn’t work that way, it is genetic. Reading this page will help you find ready answers for debunking common assumptions or myths.