Osteogenesis Imperfecta Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Osteogenesis Imperfecta. For the discussion boards, we ask that you keep your full name and location private.

Founder of the TransGlobal Health Community Center at http://transglobalhealth.com

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.

I’m 23 yrs. old, I recently found out I’m preg. with my first child. I’m married. I have O.I., and all the females on my moms side have it too.

Woman with OI

My name is Holly, my son Cadyn has OI type 3/4 Severe.

Congratulations on your pregnancy HollyHobbit… I hope that you have a safe one.

Hi my name is Danielle.
Four years ago, I gave birth to a little girl with OI type II. Sadley she passed away after only seven days with us.
I would love to speak to someone who has been through this. Thanks for your time.


I am a 52-year-old OI Type I survivor with a 15-year-old OI T1 daughter, and an almost 14-year-old OI T1 son.
Medical treatment and research has certainly seen a quantum change since I grew up with the disease, and hopefully my kids will never have to hear what I heard: “Just live with it.”

Hello my name is Lisa. I have OI type III. To look at me you wouldn’t know I had OI. The tell tale sign that I have OI is sclera, the whites of my eyes are very blue. I’m short in statue, with shots and other medication, I reached a height of barely 5 feet. I also have Scoliosis. I’m able to walk on my own, when I haven’t broken anything. If you break a bone, you know there’s pain, even after the bone heals. It’s worse for those who have OI. It feels like you bones never heal. It’s a constant ache for me. I’m not one to complain. If I wake up and something hurts, I know God’s given me another chance to do what I need to. I’ve had many many fractures in my life, more than I care to remember. lol I currently have a rod and screws in my right leg from my last fracture. I have what my Mom always called “spells.” I can go for a week, month, year without a fracture. But once I have a fracture it’s like a domino effect. I just have one break, right after another. My mother recently passed away, which is very hard for me. She was my everything. She sat with me during hundreds upon hundreds of doctors visits, hospital stays, etc. She was always by my side every step of the away. So now I take these steps alone. Knowing she is with me, just not physically with me. So I will take all the support I can get and give all the support I can. Thank You.

Wuts good, this is Nicole Miles I’m a 23yrs old African American Women who lives in Delaware. Unfortunately I have severe form of O.I. I use a power wheelchair to get me to and from, whether it’s to go to work, or to the mall basically where ever I travel I have to use my wheelchair at all times because I can not walk. I am joining this group to meet others that live a similar life as mine. I really need to speak with someone that can understand where I’m coming from, Far as being black with this disease, being young with this disease, dealing with this condition on a day to day basis PERIOD! And I believe that this I.O. community could help me make friends and assist with all those areas I just mention.

HI, I am Mary mom to two 4 year olds with OI. My daughter Alexi was born with Type III/IV OI and clinically diagnosed Type III moderate -severe at 4 months, started PAM at 4.25 months and the rest is history. She has walked at 14 months and has been running since 16 months. She had both femurs rodded at 19 months in Omaha with F-D rods(telescoping) and has had no long bone fractures since 9 months of age. She is getting ready to start kindergarten and typical of OI kids she is developmentally advanced. She scored at the 7 y 11 month range on her developmental tests at school. She is the first one with OI in the family(spontaneous mutation). My adopted son Avery is 15 days younger than Alexi and was born in Bulgaria. We adopted him at 2.5 years and started his PAM while still in the orphanage. He has made tremendous strides in the last 2 years. He has all 4 leg bones rodded with F-D rods. He walks independently indoors and some outdoors but uses a posterior walker for distance and uneven surfaces. He can even run in his walker. He loves to swim and ride his trike every day. We also recently found out he has Fragile X with some autistic features. He is on a new medicine for anxiety and is getting great services now and he made a 12 month developmental leap in 3 months. Except for expressive language delay he is mapping out at a high 3 or low 4 year old level (which we are ecstatic about). He will be 5 in July. He will start kindergarten with his sister and they will both have 1:1 aides for safety. avery is considered Type IV moderate and Alexi is now considered Type IV mild. They are both 36 inches and 32 lbs.

I have OI type one. No kids yet, but Im married to the most wonderful man in the world. I’m 4’2’’… I also have scoliosis and osteoperosis. I’m 23. We have a spoiled rotten kitty who wants attention 24/7. I dont really know what else to say. :smiley: Oh, I know… I’m Katie :smiley:

I have OI and would like to find out how others with my condition live their lives and how they get by…compare notes and help each other.

Well my son has type three and I just want to see if I can find out some things and activity 's that I can do with him that I dont know about.

My name is Sheryl. I have a son with OI. He was diagnosed right around his second birthday after having a few fractures. Our world was topsy turvy but we’ve hung in there. David is now nearly 16, preparing to get his Canada learners license and in general driving me crazy like any other teen age boy. This mail wound up in junk mail so I nearly didn’t see it. I look forward to meeting you, finding inspiration and helping where I can.

I have 2 children that have O.I. I try to keep up with all the latest on this because it is something we deal with everyday.

I have OI type 2-3. I’m 15 and would love to meet others like me.

My name is Joyce and I have three daughters, Jenessa (16 - just diagnosed with diabetes 1), Janae - 14, and Kailyn - 9 and has OI. I would like to learn more about helping Kailyn become more independent and ideas for on that on this subject too.

I am a 36 year old with O.I. and I am trying to find out if anyone knows where I could find a dentist who would do work on my teeth?If anyone could help me please do.