If I could tell medical professionals anything about OI

If I could tell medical professionals anything about OI

Listen to the patient. Don’t assume that what you have learned about the OI is true for all people with OI. That would be like someone assuming just because they’ve met one person that has something in common with you that your expected to be exactly like them…

Again,listen to the patient. They’ve delt with the OI their whole life. They’ve probably seen hundreds of doctors. They know more then you about the OI, so accept that fact and deal with it. Don’t think that YOUR right, and that YOU know what will work. You probably don’t!!! How many bones have you ever broken? How many times have you had one put in a cast or a splint or a sling or a brace or one of the many other medical devices designed to hold it in place? They have more experience dealing with it. They know what will work better. Don’t try to force them into something that won’t work. Your putting them in more pain and wasting their time.

Also, turn the x-ray machine up, so you can see better. Their bones are not normal and can not be compared to normal bones. Watch for even the teeny tiniest little crack, because it could very well be a break that you would otherwise pass up. Also, relies that they probably have a higher pain tolerance then a non OI person. For them to come in for something, it must really be bugging them. Find out what and do your best to fix it. Of course though, listen to them. Also, not all breaks or fractures have to have a reason for happening for an OI person. Don’t assume that they’re lying, don’t assume that they’re faking it, don’t assume they’re just looking for drugs. Realize that their bones and their bodies aren’t like a ‘normal’ persons.

Educate yourself if you know your going to be seeing an OI patient, or even learn about it just incase you may run into one. If your not willing to educate yourself about them, and give them the same courtesy, respect, and level of care that you would anyone else, turn them away, don’t waste their time and money.

I say all this because of my personal experience with medical professionals. With as much difficulty as they give me sometimes, I have often thought of (if I had the money) finding a medical supply store and buying everything I could need, and just treating myself. I would of course still need to find a way to deal with the pain. But sometimes I think that it would really be easier then going to doctor after doctor again and again, only to be told that what I knew in the first place was correct, eventually.

I know when something’s broken or fractured even if your not looking hard enough to find it. I know that your air casts don’t fit me, I know that only one of the types of ankle braces will either. I know when I’m just sprained, and I know when I’m broken. I don’t come in for sprains. I do what I’ve been told a million times, that whole RICE thing, and I baby whatever is hurt, and put in an ace bandage or a brace if it’s not to swelled to fit. I do exactly what you would tell me to if I came in, so why should I waste my time and money? If it hasn’t healed at all in a month I’ll assume I was wrong and come in to have it x-rayed. Usually then you might see a partially healed break. Even if I did come in in the first place and to be told it was only sprained. So I don’t come in unless something in REALLY bothering me, so find it and fix it and realize that I know what will and will not work for me.