#osteogenesisimperfecta

❓ Did you know that the last day of February is National Rare Disease Day?

❓ Did you know that 1/10 Americans lives with a rare disease?

🔗 Head to rarediseases.org to learn more

📢 Representation in arts & media is crucial for raising awareness! So, we've curated a list of fiction books that tackle just some of the conditions considered rare diseases.

💬 There are 88 books included in this list- how many have you read?

💬 Is there a rare disease you wish had some representation in the fiction world?

Okay, let me start with my life story first. I want to be as honest as possible and really invite you into my story so there may be sensitive topics involved.

I was born with a brittle bone disease called Osteogenesis Imperfecta. I will be calling it by the nickname OI from now on. I have a moderate Type III/Type IV. I have had multiple surgeries over the years to put rods in my legs and spine so they wouldn’t break as easily. If I did break my leg, I would usually break the rod as well and have to have it replaced. In total I probably have had at least 15 surgeries in my lifetime. I am a full-time wheelchair user as I get tired easily and it hurts to walk for too long. I can walk very short distances, most of the time with a walker, but you usually see me rolling around in my chair. I have posted pictures from throughout the years for a visual. The worst surgeries I had to go through were a spinal fusion to fix my spine because I had scoliosis with a 65 degree angle. A year later I woke one morning and had a broken left femur and right hip. I was at school in Dayton, Ohio. I could not get out of bed and I lived alone so my mom had to drive 3 hours from Cleveland to Dayton to take me to a local hospital. When they discovered I had two broken legs and that I had OI, no surgeon would agree to operate on them because they had no experience with OI. The quality of my bones suck so many doctors are too nervous to operate because all they know about OI is how extremely brittle my bones are. The doctor in the emergency room called the Cleveland Clinic to see if they would operate on me, since that was where I was from and had surgeries there before. I had to be taken in an ambulance from Dayton to Cleveland with no pain medicine, as they were unsure when the surgery would be and didn’t want the pain meds interacting with anesthesia. At least that’s what they told me. It was the most painful experience ever. A great surgeon on call ended up taking me on and put new rods in my legs. He tried to pin my femoral head (hip bone) but unfortunately it was in too many pieces. About a month later I had to have a second surgery to have the femoral head removed. I currently do not have a hip bone as they say I’m too young for a fake one. I thought I would never be able to walk again, but after a year of practicing, I was able to walk on my own again. Perseverance pays off kids! I’ll post some X-ray pics in a separate post so you can have a visual!

I went to a Catholic school for 8 years and had to switch to public because I was getting bullied. At the end of 5th grade I had a classmate who I had been friends with since 1st grade come up to me and say “Since we are going to be in middle school next year, it might be best if we don’t hang out as much anymore” I asked why and her only answer she could give me was “Because you’re in a wheelchair”. This girl had a huge influence on 6th grade. All my girl classmates stopped talking to me and asking me to hang out outside of school. I started to be made fun of for the way I dressed, the way I looked, and for using a wheelchair. I can’t tell you how many times I came home from school crying. The only friends I had left by the end of 6th grade were all males. I made the decision to switch to public school and my life became so much better. I had friends again, I was finally getting asked to hang out outside of school, I wasn’t being made fun of anymore… It was fantastic.

The only thing that really affected me in high school and into college in regard to using a wheelchair was it was very difficult trying to date. Boys didn’t want to give me a chance because it was “uncool” to be dating the girl in the wheelchair. At the time I was the only girl who used a wheelchair in the whole high school. I had a ton of friends, both boys and girls, but didn’t receive me first boyfriend ‘til my third year in college.

In college, I would match with a ton of guys on Tinder but as soon as they found out that I used a wheelchair I would get ghosted. I had a few guy friends I developed crushes on but besides a few kisses here and there when we had a few drinks in us, the relationship went nowhere. I spent a good while being in the friendzone until I found my current boyfriend, Rich.

Rich has been a source of ultimate happiness since December of 2015 when we first matched on Tinder. We currently live together and own 2 cats together. I really think I’m going to marry him someday, once we’re both done with school.

I gave my boyfriend the sketchbook I’ve been doodling in for the last 3 months for his birthday. He LOVED it (which makes sense, it’s a good fucking present and he fell in love with me partially because of my comics. I’m kind of screwed actually he doesn’t even remember his Christmas gift, which I also thought was good. But it was store bought. I have like one more good gift up my sleeve for the next holiday we have together but after that I have no idea how I’m gonna top this).