OI Foundation

Osteogenesis Imperfecta


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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Latest Activity

Profile Iconalen27 and Celesté Joan Labayen joined OI Foundation
Erin Jansen is now a member of OI Foundation
Aug 12
Dorota replied to Charlene Evans's discussion Experience with Bisphosphonates for Type 1 OI
"I would like some opinions from other parents as well. I have a 4 year old daughter who was just diagnosed with type IV. She has wedging in her vertebrae and had 2 compact fractures of the vertebrae (pluse some of the other bones) We are not sure if…"
Aug 9
Profile IconIrishTwinsMomma, Human Growth Foundation and Dorota joined OI Foundation
Aug 9
Jessica is now a member of OI Foundation
Aug 6
Kali S replied to Kali S's discussion Parents that have baby's with OI type 1 or 4
"Hello Charlene, I'm sorry to hear about your son I know how hard it is when they break something... We had a nurse come to the house for a couple months to make sure everything was going good, taking temps, checking for breaks, etc. she was…"
Jul 25
Kathleen McCarthy is now a member of OI Foundation
Jul 24
Jennifer Porter replied to Kali S's discussion Parents that have baby's with OI type 1 or 4
"Charlene, we are waiting for a diagnosis but believe type 1. I am looking someone to chat with as well."
Jul 22


Experience with Bisphosphonates for Type 1 OI 1 Reply

Started by Charlene Evans. Last reply by Dorota Aug 9.

Parents that have baby's with OI type 1 or 4 5 Replies

Started by Kali S. Last reply by Kali S Jul 25.

Relocating 4 Replies

Started by M. Burrell. Last reply by M. Burrell Jul 17.

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…


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…


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…


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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