Once we found out how rare of a disease OI was (approximately 20,000 - 30,000 people in the United States with the varying types - moderate to severe) we began doing our own research. We realized that we were going to have to because there just isn't that many specialists and very few people that know about the disease in our area.
On July 15th, 2008 we had an appointment with the Patient Care Co-ordinator at Shriners Hospital. We were given her name as the person who could best answer our questions about local specialists and programs regarding OI. She was very helpful and provided us with some books, paperwork, and other documentation - some that we had already found and others that were very good new information. She was also very helpful in telling us what services were available at Shriners for us and how to apply for them. Unfortunately, however, we felt that until we knew that we could get our little one here and keep her alive, we may not need the services provided there.
We would continue to do our own research until that time.
4 years ago