please help me

This video, is a distress call.

I need help regaining medical care for my rare bone condition (osteogenesis imperfecta)

only one hospital in my area has trained staff with a history to deal with it, and now they refuse to treat me because "I'm too old."

please watch, then follow your heart.

Category:

Nonprofits & Activism

Tags:

• distress
• help
• osteogenesis
• imperfecta
• discrimination
• health
• care
• brampton
• ontario
• toronto
• wheelchair
• sickkids
• bones
• sos

[flyballdogz]

Hope your doing well and haven't had any fractures lately, I have OI too (type III - i think, over 500 breaks buts thats counting ribs otherwise about 300). I am in Australia and had pretty much the same problem you did when I hit 18. After getting care at the childrens hospital and treatment for my condition it went too nothing except the occasional admittance to hospital when I had multiple fractures at the one time and needed more care than my parents could do at home & painkillers

[mybonesbreak]

@flyballdogz (sorry for reply delay, site issues) (nods) other then a couple breaks which i dealt with on my own, (foot, ankle, hand) i've been pretty lucky lately (knock on wood) sometimes my knee caps try to relocate them self's in a less then anatomically correct location, but luckily / thankfully I've kept them where they should be. 500 ! holy shit. you've broken your ribs 200 times ? i had my first rib breaks (3) in the last year.. (shakes head) are you ok ? soft hugs. best wishes

[lancifer75]

i dont understand your situation since i have the same disease and ive never have been to a oi specialist.do you have another disease that comes with the oi that i dont have?i thought of doin this to try to get financial assistance but to get me a vehicle so i have transportation to doctors office.

[mybonesbreak]

@lancifer75 (Sorry for the delay.. site problems) (yes.. lol for over a year.. it sucked !) How serious is your case of oi ? how many breaks ? have any implants ? OI from what i've read is technically a mix of many conditions in a way due to the fact that its cased by a genetic collagen strand defect. Teeth, bones, hearing, are just some of the issues that can go with this defect. How are you doing these days ? Best wishes.

[TitaniumWheels]

Hey I have a question, what extra care do you need? I mean, any orthopedic surgeon should know how to fix a broken bone, right? That's what mine do, occasionly they will have to put a rod in the bone, to help it heal correctly, but that is something any normal doctor can do, there are specialists in OI of course, well, I guess I don't know your story, why don't you try getting intouch with the OI foundation? OI sucks, there isn't a cure, but we live on, go us! lol

[mybonesbreak]

@TitaniumWheels

so with that said.. i need a doctor whom is well practiced with extreme fragility,

with what would basically amount to be doing micro surgical operations to put the

shards of bone back together.. i need someone who can think outside the box to fix /

reinforce my legs so i don't loose them. a regular doctor simply won't cut it.

[sisisi007]

@mybonesbreak

We all have our own limitations and disabilities, and life is so fragile that there is no guaranties for any of us. Stay positive and connect with people that understand you.

xox

[mybonesbreak]

@TitaniumWheels

my legs, are so weak..

its basically a thin candy coated shell -barely- (if at all) covering the metal rods

running through them.. my knee caps are the size of loonies (slightly larger then a quarter)

and my shins are in no better condition.

without someone who knows what they are specifically doing with such fragile bone..

(and even then.. it is now still a gamble) i could / would very likely loose my legs either

just by decay / degradation or during the next traumatic event

[mybonesbreak]

@candu25

Sorry for the delay.. lots of notification and site issues..

i had no idea so many messages were waiting. (shakes head)

to this date, June 12th 2011 i am STILL with out proper medical care.

there has been no change in my status..

the "health war" continues.

the search for someone to fix me.. lingers on.

thank you for your applause of my courage :)

(hugs)

[mybonesbreak]

@RichColours

in some ways i wish i could..

and if i could.. maybe i would..

but i have no way to afford the cost of medical down there..

I'm on disability income.. i have no way to earn money..

so even if the medical -somehow- got covered i still have basic living costs..

..and thats not even taking in to account having to leave all my friends

and family behind.

that said..

it is something i'd consider if i found out that Donald Trump was my long lost Uncle or something :D

[mybonesbreak]

@sisisi007

(sorry for delay.. lots of site issues)

I actually just got referred to a reumathologist not too long ago,

appointment pending..

BUT my issue has been with finding an Orthopedic Surgeon..

that is the primary URGENT issue -STILL- at hand today, June 12th 2011

[mybonesbreak]

@RedDragon7777

(sorry for delay in reply.. major issues with notifications and login)

I can't really speak to a gender bias myself..

I'm sorry if that has been something that you have faced..

..i hope what ever major health issues you have, have improved since your post.

Best wishes.

[mybonesbreak]

@usernamekaydee

Thanks for the invite ;)

I'll keep that in mind :D