Discussions By Condition: Medical Stories

Need answers please!

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • September 26, 2013
  • 08:02 PM

Hello everyone My name is Crystal and I'm 33 years old...I'm hoping someone can help me get a bit more info about Dentinogenesis imperfecta, And I have this condition I just mentioned and everywhere I look it says it happens 1 in 6,000 to 8,000 people, well have I got a story for you then, cause that means my genetics beat all odds.... I'll tell you how, ok well my biological father has the same disease and his first cousin, or at least this is what I was told sense I don't know him and have been looking for him sense I was 12, well any way his 1st cousin has it, he has it, it was suppose to skip me and get my children, well it didn't I got the Dentinogenesis imperfecta and have been dealing with it for years before I actually found out the true name of this horrible disease....I finally decide to look more into it cause not only do I have it, 2 of my 4 daughters have it, told you I beat the odds...Well I've been researching the websites about this for 3 years now and I still can't figure out how my 7 year old and my 5 year girls got the same exact disease I do, my oldest don't have it and my youngest don't but she has a lot of severe medical problems, she beat the odds too she's wasn't suppose to make it past birth, then 6 months and here she is today and at a strong and healthy 4 years old, but I cant help but wonder if my deficiency played a part in her multiple brain abnormalities, bilateral cleft lip and palate, encephalocele on the back of her head, hydrocephalus behind her left eye, and she's missing her whole corpus callosum... I just need to know if my girls are going to be ok and if there's that slim chance their children might get it.....I'm just trying to prepare myself and them for the hard years ahead... I make sure they brush their teeth everyday, but they cant brush for to long cause their gums start to bleed, then when their teeth come through the gums its not just popping through they shred though their gums, I completely dread them getting a tooth ache its horrifying for them most of all.... Them when they went through the biting phase, wow that was fun when my 7 year old, then she was 3 decided I'm going bite my sister then 1 1/2 and I spent the next 3 hours in the ER getting them both stitches, one had 11 stitches and the other had 9... Their teeth are like glass and very sharp to boot...I remember when I was little I was hospitalized once for me teething, I was in so much pain they actually sedated me, then when I was 11 I was hospitalized again just for brushing my teeth, I lost two coffee cups of blood that day and 3 days in the hospital... My girls can't eat certain things, like caramel apples(they've never had one), can't eat nuts, toffee, peanut brittle etc... And I missed out on a lot as a kid and I just sick and tired of them missing out...S the moral of this novel (lol) is that I need help with this so I know what to expect along the road and be more prepared them my mom was....So PLEASE if you got any good info or advise on how to take better care of them let me know....Thanks for listening to my story, Hopefully someone reads my story or all of this was for nothing..... Thank you again..............♥♥♥♥♥♥Crystal♥♥♥♥♥♥

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