I am trying to get information out about this disorder, and am hoping to make it onto The Doctors TV Show with my story to get the information out to more people. They talk all the time about how oral and dental health is so important to overall health. This disorder primarily effects the teeth, primary and secondary teeth, and usually results in the loss of all teeth in early adulthood. It's a dominant genetic disorder that causes discolouration (pretty sever, no way it can be overlooked, in our family it's pearlescent gray teeth, but I hear it can be brown to amber as well). As a child myself no one knew what should be done, so things happened in a way that lead to more damage then needed for me (as well as over a year where I wasn't allowed any sweets as a 5 year old). Several dentists I have seen over the years have either never heard of or deny the existance of this disorder. At this point now I am 32, toothless, and have no likelihood of getting teeth. I have dentures, but I can't wear them because I don't have any soft tissue in my gums, so it feels about like trying to walk around all day with a brink strapped to your shin. Not all people with this disorder lack soft tissue, my father wears dentures and has for around 40 years now.
My daughter is almost three, she has just gotten her last tooth fully in, and so now when she sees her dentist next will need to be schedualled for crowning of all her back teeth (not sure exactly how many in all). Getting them crowned should prevent some of the problems I had, especially the wearing down of the teeth effecting jaw development. With my daughter we have actually managed to find a dentist who is experienced in this condition and knows what to do with her.
We have also seen a genetisist, but he hasn't been able to be as helpful as I hoped...apparently there is so little interest in this disorder that little is known for fact and no lab in the country will bother testing for it, and basically no one seems to care. He can't tell me if the joint issues I suffer from are part of this disorder, or not. This disorder is linked to Osteogenesis Imperfecta (OI) also known as fragile bone disorder, and may include other side effects of OI. We know that there is no OI in our family at this point. Connective tissue and other areas though may be effected.
The major issue we have with this is insurance related (What a shock right...insurance wanting to avoid paying). We have pretty good medical and dental covereage generally. The dental will happily pay for the care for this, but has a $1200 annual cap, and will only pay a share of some of the work. Our medical insurance states that this is dental not medical and therefor not their job to pay. Every doctor I have seen; which includes my doctor, my daughter's doctor, a cosmetic dentist, an oral surgeon, my daughter's dentist and the genetisist, say that this is a medical condition and should be covered, but since no one knows about this disorder, (even though it is said to effect 1 in 7000 kids each year)and no one cares about what they don't know about, the insurance can do what they want. I am getting worried that the effects on my appearance are permanant and won't be fixed even if I get teeth (sunken in around the mouth and all, thinning lips....you know old lady mouth I call it). It would be nice though to bite into an apple, eat unsoggy cereal, go to a resteraunt for the first time without worrying I won't be able to eat anything, etc.