OI Foundation

Osteogenesis Imperfecta

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To the Osteogenesis Imperfecta Foundation's online social network. Information posted by members on this site is not verified by the OI Foundation. If you would like more information about OI, or living with OI, please contact the Foundation directly at bonelink@oif.org.

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Groups

 

Latest Activity

Jon joined Sarah Buchan's group
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OI Type 1

This is a group for everyone with Type 1 OI to discuss anything and everything OI related and non-OI related.
16 hours ago
Jon replied to Charlene Evans's discussion Mother of son with Type 1 OI - second child on the way in the group OI Type 1
"Hey, My name is Jon, 27 year old , and I took Reclast which is a bisphosphonate when I was about 20 years old and I don't have any repercussions yet. Note I have type 5 so I'm not sure of the direct correlation. That being said, when…"
16 hours ago
Nathan Rubio is now a member of OI Foundation
yesterday
Charlene Evans added a discussion to the group OI Type 1
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Mother of son with Type 1 OI - second child on the way

Hello, I am a 27 years old and I have Type 1 OI. My OI didn't effect me much growing up, I broke fingers and toes often but only had to major breaks during my childhood.I was finally officially diagnosed with the disease when I was pregnant with my son. Because OI never impacted my life much, we decided to continue with the pregnancy without getting genetic testing.When my son was born, we have a planned C-section because of the risk of breaking my pelvis during labor. As soon as he was born, I…See More
Jun 17
Charlene Evans joined Sarah Buchan's group
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OI Type 1

This is a group for everyone with Type 1 OI to discuss anything and everything OI related and non-OI related.
Jun 17
Charlene Evans posted a discussion

Experience with Bisphosphonates for Type 1 OI

Hello, my son is 21months and has had 3 tibia fractures. We are currently applying to the Montreal Shriner's Hospital to get more information on bisphosphonates. He has type 1 OI. My question is, does anyone have experience with relatively mild OI cases receiving bisphosphonates? I am trying to get more information about the long term effects of this treatment. Thank you for your help.See More
Jun 17
M. Burrell and Jennifer are now friends
Jun 15
M. Burrell posted a status
"Sharing"
Jun 15

Forum

Experience with Bisphosphonates for Type 1 OI

Started by Charlene Evans Jun 17.

Relocating

Started by M. Burrell Jun 4.

Hoping to gain insight 2 Replies

Started by Dakota Lea Roby. Last reply by Dakota Lea Roby Mar 24.

Blog Posts

Hoping to gain insight

Hello Everyone, my name is Dakota Roby and I am a senior in high school. I am a nursing assistant and going into the healthcare field. I have already began classes and in my lab we are doing senior projects. For my project, I am doing research of Osteogenesis Imperfecta. I first heard of this disease through a book I read, Handle With Care by Jodi Picoult, and the story was inspiring, as much as it was interesting to read about. I want to learn more about this diesease, anything and…

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Posted by Dakota Lea Roby on February 5, 2016 at 9:49am

The Return

Good god has it been that long since I been gone? 6yrs lol Well I see not much has changed here but as for me well gotten older lol. Joined this site when I was 26 now 31 and been having my share of physical battles and overcame them all. Would go into detail about what Ive been thru the last 6yrs but dont wanna bore anyone with a novel size blog lol so just to give those a piece of mind I updated my pic and changed background just to show that Im still around and came back. Hope everyone is…

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Posted by Damon on July 3, 2015 at 3:19am

Unbreakable spirit

Hello, I'm Micahia or Kya as my friends call me. I have OI type I. I am currently struggling with chronic pain from a fall about 7 years ago. I have degenerative disk disease, spondylolisthesis, scoliosis, levoscoliosis, sciatica and a pinched nerve all from the same event...(minus the scoliosis) made worse from a couple similar falls over the years. Me and my pain management dr are working things out with suboxone and gabapentin, they are working pretty well but i certianly hate the…

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Posted by Micahia on June 18, 2014 at 11:52pm — 1 Comment

Posted by Nanzel on September 23, 2012 at 10:08pm

Posted by Nanzel on September 23, 2012 at 10:00pm

 
 
 

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