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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 ...  
 
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TitaniumWheels (2 months ago) Show Hide
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sorry that last comment was duplicated, i thought it didn't work, i didn't see that it was "pending approval" my bad. but as i was saying the two specialists i know (sorry they are in the U.S.) are Peter Byers in Seattle, Washington at the University of Washington Medical center, and another named David Shapiro, at Johns Hopkins in Baltimore, Maryland, try getting in contact with them. Good luck!
RedDragon7777 (3 months ago) Show Hide
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You are a man and that is the main reason why us guys can't get the type of help that gals get. I have major Health issues but diffrent.
g0uveia (6 months ago) Show Hide
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hey james. i'm matthew.
i have O.I Type 1. i've just gotten an appointment at mount sainai in their genetics clinic.
sickkids isn't the only one. mount sainai and toronto general also specialize.
(416) 586-4800
FRED A. LITWIN FAMILY CENTRE IN GENETIC MEDICINE
University Health Network & Mount Sinai Hospital
60 Murray Street -3rd Floor, Rm 400
there might be a waiting list.
best of luck.
mybonesbreak (5 months ago) Show Hide
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Hello Matthew,
Thank you for the comment / information.

I have to ask though, are the people you see Orthopedic Surgeons ?
or are your visits there for the purpose of administering a bisphosphonates style drug
along the lines of pamidronate , Ibandronate or Zoledronate ?

as my issue isn't with the drug issue,
as it is in the sense of drugs or no drugs,
i'm gonna break again and will need to be fixed.

If you see an Ortho-doc.. may i ask, who ?
and how many breaks have you had ?
Thanks.
joel88x (7 months ago) Show Hide
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I don't even have the court jesture.

XFD
mybonesbreak (5 months ago) Show Hide
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Do you have Osteogenesis Imperfecta ?
GlassBoneMan (7 months ago) Show Hide
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haha for some reason the humpdy dumpdy part made me giggle.

it was a cool metaphor though.

i was also recently wondering what OI type you have. you look like a type 4 or maybe 2. but i'm no expert. (i'm a type 4)
mybonesbreak (7 months ago) Show Hide
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hehe.. thank you.. and well, it is true :)
we are the living incarnation of HD to the truest extent.
-

As for the type of O.I i have..
no clue.

i was diagnosed 25/26 years ago before
the numbering system took effect..
my parents were simply told it was "Osteogenesis Imperfecta, Tarda"

now.. theres like.. 8 or 9 types i think..
mybonesbreak (10 months ago) Show Hide
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that total support.. the cost of it.. over the course of a life time would be massive.. i'd be open to the idea & concept.. i'm pretty sure that NY has a good OI trained hospital and staff..
but i don't even know what the legality's would be
of me trying to start my own fundraiser, -while- i'm currently on disability income..
they may not allow it,
and it -may- not raise enough to sustain me,
so i could end up even worse off then i am.

I'm open to continued dialog / ideas if you wish
Thank you
mybonesbreak (10 months ago) Show Hide
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if it did boil down to moving, and even if the support aspect was taken care of..
(friends, family.. girlfriend what ever.. someone to go with me so i'm not living totally alone in a new place)
then it would be an issue of here in canada ? or in the usa ?
if canada.. then again my government should pay for the health care costs.. if its the USA then i'd need to raise -SO- much money.. its inconceivable..

here, i have disability income..
in the USA i doubt i would
so i'd need -total- support

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