please help me

[mybonesbreak]

@globalnews1000

Thank you ;)

[versewild]

Hi, I stumbled on this I'm bipolar and your vid came up there and I clicked it by accident. But I listended, I'm sorry for your situation. I'm also a liver transplant, +,+, etc so I'm a little familiar with the medical run around you can get. Before my illness ended my earlier work I was an activist. And one thing that comes to mind because you're asking people to write a letter. (1 of 2)

[mybonesbreak]

@versewild I am SO sorry for the delay in approving / replying to you.. I have had so much trouble with this account in the last year it is CRAZY !! I can only see part 1 of 2.. i don't know if this is an error with youtube or you never posted the second part because of the messages needing approval.. but i hope you finish your thought.. i'm very interested indeed to hear your views.. I hope that your doing ok.. and that everything is going ok for you with all your health issues.

[lovexless]

I have it too... I really want a big club for all of us.

[miamistormz]

hey matthew, i understand what your facing, i also have osteo genesis imperfecta, and your right to be honest you,me and lots of people with our disease dont understand its pathetic, now im 5'3 and 145 ive brokin around 160 bones i broke my first femur at 6 months im 29 now the disease runs strong in my family but we dont let it keep us down if you saw me i bet youd think he dont have it because my tatoos and i live my life, id like to talk to u more im on facebook peace out look up miamistormz

[pinky4ver89]

i ave it i get told da same thing im 21ys old frm co.antrim i get drip its apd well thts short 4 wot its called but nothing is helpn plz help us xo

[cryppl3th3kyd]

Hi James, Im Tyler I have OI type IV and unfortunately the only hospitasl I can think of is Dayton Children's Hospital and Cinncinatti Children's Hospital, Im 17 years old I'm not Canadian so i know these cannot help much. I am absolutely disgusted at the fact that this hospital refuses to treat you, since the hospital i am currently getting surgery and getting my bisphosphonates at plans to keep me for a long while. I would try Mnt. Sainai. Again I am so sorry for the way you are being treated.

[mybonesbreak]

@cryppl3th3kyd

Thank you for your message of support.

i'm sorry that this thank you took so long to be sent.. (account problems)

I hope your doing ok as this message finds you..

and hey.. at least i know if i ever visit Dayton where i can go if i need help right ? :D

Thanks a bunch :)

[karijeanurrutia]

Hey baby, my name is Kari my son Skyy has oi type 3 also known as brittle bones, he has had multiple fractors and has had rods placed in his legs and we live in Edinburg, TX His dad has oi type3 but my son has broken more then his dad. I don't oi I am 5'4 and I am 25 years old so do the math I had Skyy when I was 17 years old. Well please send us a email to get any information you need karijeanurrutia@yahoo.com Love always Kari and Skyy

[mybonesbreak]

@karijeanurrutia

I am SO sorry for the delay in approving / replying to you..

I have had so much trouble with this account in the last year it is CRAZY !!

(something i'm going to have to say a lot.. because i just saw a whole bunch

of comments i was never notified about !)

How are you and your family doing these days ?

Well i hope.. :)

Big Hugs..

[ravensunn]

ive been looking for a doctor for 20 years for a doctor to help me with my oi and i too get turned away. atlanta treats children but not adults. im going to post this on my facebook page if u dont mind

[mybonesbreak]

@ravensunn

Please !!

Post away ! :D

sorry for the reply delay.. (problems with account)

Sorry to hear that you've been searching for 20 years !

my god !

I almost feel like a rookie at 13 years now :P

I hope this message finds you in good health.

[75gldy]

hey! im 15, & i have oi type 1 too! watch my vid please!!! thankyou for putting this vid up! we need to raise awareness!!!

[mybonesbreak]

@75gldy

Thank you for replying..

I enjoyed your video too :)

Contact me anytime you wanna talk :)

(like if ya need any advice from an old timer hehehe ;P)

Best wishes,

hope your well.

[Emilinepinkie]

You do have a problem....... ya........ but you should bring this to the Supreme Court! You cant just sit and make youtube video's. Yes That a good way to let people know but not the best way to actually get a lot of help. I'll give you a sugestion..... how about you put this on facebook, twitter, buzz etc! Go to the supreme court.... move to a new house! (neer a hospital)

[mybonesbreak]

@Emilinepinkie

Which house would you suggest i move to ?

near which hospital with trained OI experts would that be ?

I tried the legal route and got boned because i am only 1 person.

thats why i'm here.

because if this is happening to me its GOTTA be happening to others

who may only be one voice as well.. but you get enough single voices together

and you go from being a whisper to an army.

[OMGItsPhilipRedlund]

Oh my god......This is TERRIBLE!

[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.

[RichColours]

I have OI type 3. This is why you DONT live in CANADA. This is crap healthcare. I'm sorry dude but move to the US. There are support groups here. Go to NIH in Washington DC! I am enrolled in a research protocol there. You won't find help unless you talk to people here in the US. Go to Shriners, they'll help you.

[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

[candu25]

Hi James: A lot of time has passed since you posted. Were you able to get this issue resolved to your satisfaction? Date is March 20/10. I applaud your courage and persistence. Please post an update.

[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)

[TitaniumWheels]

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!

[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

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]

@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]

Hi, did you find a doctor since your last post?

I was just wondering, are you looking for an orthopedic surgeon or just a reumathologist?

[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

[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

[RedDragon7777]

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.

[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.

[usernamekaydee]

Come to Australia where we have a decent medical system. America is just a lousy place for medical procedures. You would get free care here. You are a great person. Thank you for sharing. Yours Kada Canberra Australia

[mybonesbreak]

@usernamekaydee

Thanks for the invite ;)

I'll keep that in mind :D

[g0uveia]

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]

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.

[g0uveia]

i do see an orthopedic surgeon, but that's at a different hospital. as for TGH and SickKids, they are geneticists who happen to also look after OI patients.

i haven't yet had an appt.

my first one is in october at TGH.

i have been accepted to sikkids, but am waiting on a date.

at sikkids the geneticist is Dr. Mendoza, but i haven't been given a name as to who i'm seeing at TGH. i just know i'll be in the FRED A. LITWIN FAMILY CENTRE IN GENETIC MEDICINE

hope this helps

[mybonesbreak]

@g0uveia

Sorry for the delay in reply,

lots of problems getting access / notifications for replys.

Indeed..

Thank you very much for the information..

some of it i will definitely look in to. :)

[g0uveia]

i've only have about 12 or 13 breaks.

my orthopedic surgeon is at toronto western. his name is Dr. Khalid Syed.

and as for the treatment question, yes, they do treat people in various ways based on where you sit on the OI spectrum.

again, i haven't sat down with them yet, but i have been informed that treatment is available.

[mybonesbreak]

@g0uveia

12 or 13 breaks..

thats pretty good :D

hopefully none new since your last message ? :)

Dr.Khalid Syed.. (scratches head)

for once, that doesn't ring a bell..

Thank you very much..

I will look in to it :)

Hugs.

[RedDragon7777]

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.

[joel88x]

I don't even have the court jesture.

XFD

[mybonesbreak]

Do you have Osteogenesis Imperfecta ?

[GlassBoneMan]

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]

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..

[loneless]

James, My name is Mike. I am from the USA. To tell you the truth, I do not know much about OI, but after watching your video and reading further into OI, I feel saddened about your situation. I wish there was a way I could help. If your in a financial situation, perhaps you could make a fundraiser. If enough people will care, and we can raise enough to find you a doctor, a hospital, somewhere that specializes in OI and will accept you. Please reply with what you think. Best wishes, & good luck

[mybonesbreak]

Hello Mike..

Thank you for taking the time to view the video and for taking time out to comment.

Regarding your question..

its a tough one to answer in such a small space.

technically to -start- with,its not a financial situation as canada has free health care..

however, as no one in my province (state) looks after my condition, then its a matter that i could have to move if i can't find one.

-then- its a partial matter of money,

partial matter of having support.

don't want to be alone.

[mybonesbreak]

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

[mybonesbreak]

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

[curvaciousMammi]

YAY FOR CALgary

[GlassBoneMan]

my name is tyler major, im 14 years old, and i have your disease. you said you accepted how you were. same with me. you have a strong heart my friend, and i would gladly break a hundred bones to keep you from breaking one.

please reply.

=)

[mybonesbreak]

Thank you for your message and the feeling behind it..

I could never ask or accept anyone taking those level of damages to prevent me from having just one.. (even if it were possible) but i do thank you for the thought and hope you stay strong as well..

Being 14, this must be a scary situation.. to see what i'm going through and how it -could- be your future as well.. I hope its not.

Best wishes..

James.

[blaydwarf]

I had 3 different Dr's when I was a child but they were older now the last one passed away when I was 19 & he was my Dr. from child hospital in Calgary but treated adult's with O.I & now I have to find one because my spine started to loose calcium & my regular Dr. is clueless as to why its going on but that's life at least there is PS3 & bass guitar & art to keep me busy so I don't dwell on it.thanks for the return message.

[mybonesbreak]

Loosing calcium in your spine ?

not density, but -calcium- by name ?

thats odd..

When you were diagnosed with OI i'm betting you were in the same spot i was, that there was no actual dna / genetic test for OI then..

Maybe you should find someone to do a genetic screen now that were more technologically advanced..

to make sure its not Rickets or another bone weakening condition that gives similar symptoms ?

Just something to consider.

Good luck to you,

and maybe you should post a video too :)

[blaydwarf]

I was tested when my kid was & I was told I have aspects of 2 kinds of O.I & my kid has one the dr. said it was odd he said he hadn't seen that before so who knows but I am going to get 2nd opinion that dr. seemed to be a bit of an idiot. I seem to get the stunned one's.

[blaydwarf]

Hello I know how you feel I live in Alberta I'm in my 30's & still haven't found a Dr. that knows about OI and if they say they do when you start to ask questions they seem to have no answers your not alone.

[mybonesbreak]

Did you receive the proper treatment from someone (specialized doctor) who knew what they were doing when you were a child ?

(I'm sorry were in the same boat,

but it is nice to have company..sandwich ? ;P)

[xxxchurchxxx]

I'll tell my friends and tell them to tell thier friends. my prayers are with you.

[missmommy185]

Hey, I stumbled across your video and I just wanted to say how sorry I am for what you are living with. You seem like a very smart guy and it is sad to have a condition such as this. Good luck and I really hope you find the help you so desperately need.

[xxxchurchxxx]

Are you still in trouble. I'm just a 16 year old kid from the U.S. but I could tell my friends about this video. Are those retards still not serving you. Could you take them to court on it?

[mybonesbreak]

I am still in deep trouble regarding this situation.

Even while filming the video I continued to search for other medical care and never found it.

As for court,I honestly have no idea what I can do.

I had a lawyer at one point,and with out getting in to everything..

I feel like I did not get a "fair shake"

through the legal system with him.

He tried one non-court thing, it didn't work..

he then gave up without notifying me and I

didn't realize for months.

All help is still needed / welcomed.

[mybonesbreak]

I've heard bits about basilars over the years, but i really am in the dark about it..

for anyone else who may read this,

who are curious (as well as myself)

if you do re-read this thread,

please feel free to (if you wish) to tell us about it ?

Good luck :)

[mybonesbreak]

Hi Dellerox,

wow.

I'm sorry your in the same boat.

in a way its nice to have company,

in a way I wish I was the only one.

lol, in a way I wish ya lived closer so we could fight this together !

[dellerox69]

hay i also have OI and i am in the same boat as you the only hospital that speacialisis in OI here has kicked me out and also it is a childrens hospital,also i dont know if you have heard of this but i have basilars impression and they have NO treatment for that here at all the only treatment for that here is 12 hours away and its not always easy to get there so i know what you meant exactly

[TidePools]

Sean Stephenson used a special diet to change his body chemistry and he has not broken a bone in several years. You can contact him on Youtube. His account name is Seanclinch.

[mybonesbreak]

@TidePools.. Thanks for the info / lead.. It is something i will look in to, as any bit of -safe- bone reenforcement can be a real help.. however i would have to do a lot of investigating before i could actually do anything anyone suggests as far as body chemistry changes. Also, even if it proves fruitful, it still doesn't dissipate the main problem.. sooner or later, i will break again.. I will need help.. and there is no one that can, who will. Thanks for the info :) James.

[TidePools]

I hope you contact him, he has learned a lot of the condition that has improved his quality of life.

[mybonesbreak]

I already have :)

two minutes after i got your first message.

Thanks a bunch :)

[TidePools]

Kewl. You deserve all the help you need, many prayers for you brave man.

[allergic2kryptonite]

There are too many people in this world (and on YouTube) with little or no COMPASSION.

This is discrimination. James, your composure

in this video is incredible considering your

condition compared to the apathy of the healthcare system and the abundant resources

they were entrusted with to help, not just a chosen few, but any and all who desperately need the treatment and services like you need.

Thanks for the update in the email Bro.

[shyanndreamcatcher]

Hi, I also was born with OI but I have Type 1and had to have sergery on my knee, the doctor didn't know to much about my OI and he messed up my knee by cutting a nerver by accident. I have problems with my knee still.

[TidePools]

Where do you live? In Orange County CA there is a doctor who has special equipment for nerve repair, it is the same equipment used by Lance Armstrong when he had damaged nerves after his cancer surgery. It fast forwarded his healing so he went on to win again.

[mybonesbreak]

Some may wonder why I allowed this spamish message to be added..

Because until the clearly jealous beard comment, he or she had a valid question.

Would I do for others,

what I am asking others to do for me ?

Yes.. if I had the name of the condition,

researched it and found that indeed..

it is rare, your eyes really melt out of your head and only one place near you can treat it I would write any government on earth to do my part for your health.

even after the childish beard comment :P

[thethickrepeater]

Eg I have a rare condition that make my eyes melt. Are YOU going to write off an angry letter to a foreign government? If not, then you can't expect anyone to help you.

Ps Your beard looks stupid

[fusle14]

you can go fuck ur self at lest he is doing something about it... what are you doing ur just sitting there u wont to let ur eyes melt you go ahead and do that fuck face