FAQ

PATIENTS DOCTORS CLINICIANS PARENTS FRIENDS CAREGIVERS

HOW DO YOU PRONOUNCE THAT, AND WHY?

Well it's an IT thing, and the net was CREATED by IT folks (sorry former VP we have facts that you weren't part of it, but IT folks like secrets nd making everything an abbreviaton that most of the world wont understand is something they enjoy. So, FAQ (AKA FACK) are questions that get asked over and over by folks who are new to something and it happens almost everywhere in life. If you collect Beer cans, there is an FAQ I'm sure (who knows what a 'cone top' is?

So sit back, relax and read on, as always if you find something that you don't agree with let us know.

If you have a question that you think ABSOLUTELY needs to be added, please let us know.

In most cases we wont answer a question without scientific/medical research behind our answers, because there too many ideas running around about OI.

The one time where there may not be a Research Study behind it is if we discuss a survey that suggests a common community experience based answer.

FAQ1 - I have Osteogenesis Imperfeccta and I am ALWAYS the warmest person in the room, sometimes it could be freezing outside and I'm sweating?

FAQ2 - I know that OI is supposed to be all about Brittle Bones, but should I have to worry about anything else?

Interesting that you should ask. as I'm sure you probably know by now OI is not about Brittle Bones that's just the way the disorder

displays itself. But over the last few decades we have learned that OI is more about the way your body produces collagen, and in our

case, its about not making enough, or the quality of whats being made not being good quality. If you click the FAQ you'll see the

start of the list of what we have been able to put together by combing the research developed since the turn of the last century.

FAQ3 - I think my child has OI, but the Dr has run tests and yet he doesn't think that he has OI.

A few years ago there was a study performed and several papers published that bring to light the idea of Late Onset OI.

In the past the term "Late Onset" has often referred to conditions that manifest later in life, in the case of Osteogenesis Imperfecta, Late Onset has radically different meaning. Please follow this link to the posting of a lay summary review of the two papers and, if we can get the links posted to the research papers themselves.

QUESTIONS,

I have OI and ALWAYS feeling HOT, is there some connection between the two?
- Folks have been asking this question of their physicians for YEARS and the answer is pretty much the same across the board - 'No of course not, I'm sure your just imagining it'
- I personally know I wasn't imagining anything as noted my wife and I spent Christmas with her extended family in Virginia, just off (100 yards?) the Potomac river and at least four feet of snow on the ground, and I needed to sleep with the window open. Really, to use the bathroom in the morning we had to break the ice on the commode but I slept with a sheet on. So we have all known that at least certain types of OI have SOMETHING that's generating heat

2. I have OI and I always hear it being referred to as "The Brittle Bone Disease", but if I understand, my Collagen's not good, in one form or fashion, are there OTHER areas of my body where something could go sideways because of this?

* That's an excellent question, and prior to 1996 the answer would have been NO and you would have been sent n\on your way.

* However, for MANY reasons, 1996 and beyond were banner years for OI research, so unfortunately (?) the answer is now YES, there are definitely other things to watch for. But rather than focus on the negative, we at TheOIGuy.com prefer to look at the lighter side of life. * But we don't want anyone to think were hiding from these results, so please feel gfree to click MORE, and see other areas to highlight

as well as the research and studies to support these findings. I will let you know, this is a section that took a great deal of work and research and therefore is very well annotated.------------------->>>>>>>>>>>>>>>>>MORE

3. My child has had 3 breaks in 9 months, the Dr. said that he tested her for OI, but the tests don't show anything. How could this happen?

*Several years ago a study was conducted whose conclusion was, among other things rather surprising. When all was said and done one of his thoughts was that perhaps OI was not ALWAYS detectable at birth, in fact it could be a year or more before a genetic

issue might stand up and announce itself.

HOME