Hi! I’m Kaitlyn! I’m 23, and was diagnosed with Osteogenesis Imperfecta when I was 16 weeks in utero. When I was diagnosed, my mom and dad didn’t ever hear those words before, and it was like a foreign language to them. Shortly after diagnosing me, my mom was diagnosed. We both have Type IV but strangely enough, I have a more severe case than my mom. Having OI is hard in everyday life, and it causes other health issues than I would ever think. Since having OI, I’ve been diagnosed with Dentinogenesis Imperfecta (DI), I have some hearing loss, trouble seeing, I’m short in stature, asthma, ADHD, and other medical issues caused by this genetic disease. It’s hard to live a “normal” life from going to multiple hospital visits, and having countless surgeries, but I always try to look at the bright side, even if it seems impossible.
I’ve had well over 150 broken bones and micro fractures (according to my last bone scan), and I’ve been in almost every color cast when I was little (except black!) When I was really young I had my first rodding surgery to have two rods placed in my femurs and then had the same done in the other leg in order to keep my femurs strong. Ever since my first rodding surgery, I’ve had so many, I’ve lost count! Once I got older and got the rods placed in my legs, I stopped getting casts on my legs because after having each rodding surgery, it would make my bone weaker with both rods and a cast on my leg. However, I still got casts on my arm….my favorite colors were pink, purple, and yellow!
Having OI has been a struggle for me physically. I’m not allowed to participate in contact sports (basketball, soccer, etc…). I’ve never been able to participate in gym class, and I get very fatigued easily. I have chronic pain and it’s rare nowadays that I have a day that I’m not in pain somewhere on my body. I learned that I can’t complain about pain anymore unless it is severe enough because unfortunately I’ll be dealing with this for the rest of my life.
Having DI, I can’t really eat anything that you have to chew. It’s been hard because I can’t get protein from regular meat so I have to make sure I drink milk, or eat eggs, or whatever else that is soft that contains protein. When I was in 7th grade, my journey on my teeth and jaw alignment started. I had to have surgery to pull out my top front four teeth, which included both my permanent teeth. After the stitches dissolved, I had to get fitted for my first appliance. Although it doesn’t help me with eating, I still wear one to help me with speech.
All throughout high school, I was on and off crutches. Thankfully my teachers were understanding and would let me leave the classroom a few minute early so I could go on the elevator to go get to my next class on time. I had the most supportive friends, who would be willing to help me carry my backpack or hold my lunch tray when I was on crutches and go on the elevator with me.
I graduated in 2014 and am now in college. I’ve changed my major a lot and am happy to say that I’m going to be transferring to the University of Cincinnati’s Criminal Justice and Forensics Program! I’m excited for this new adventure and to go to the school I always believed was home!
If there are any fellow OI’ers who need a new friend or someone to talk/vent to, I am always looking to meet new people who have OI!!! Add me on Facebook or follow me on Instagram or share my blog with friends and family to help get the word out!
Living a Double Life 