Have you ever played the ice breaker game 2 truths & a lie? Well if you haven’t it is where you are to think up 2 truths (could be unique or simple) and a lie about yourself, then the others are to guess which are the truths and the lie. This game to me always seemed fun cause my truths always seemed questionable. My three were:
- I have broken 20 bones
- My dad use to be a stunt double in his early twenties
- I can touch my nose with my tongue.
Some people would pick 1 & 3 as the truths, but most were so confused by the extreme of the first two they weren’t sure. Which are the truths? Number 1 and 3 are the truths!
When I was born I was diagnosed with Osteogenesis Imperfecta (OI), also known as Brittle Bone Disease. There are six types of OI, my type being the most common, which is Type 1. It is hereditary so both my dad and sister have it. From the age of 5 to 22 I have broken 20 bones, fortunately I haven’t had any breaks since 22 (knock on wood). You might think, does that mean if you fall or bump something you break? Not necessarily. My most ridiculous break was when I tripped over a child while working daycare and my most extreme was breaking 11 bones in a car accident (which I will talk about in a later post). Most people with my form live normal lives, but we set limits to what we can do. Unless you are like my dad who would test those limits, which is why he has broken over 40 bones.
I am very lucky that I do not have the more severe types of OI. There are many that can break just but getting out of a chair too fast or land too hard. Life expectancy can be short as well. Their lives include multiple surgeries and majority of their life is in casts. I will say though, the individuals that do that these types are some of the hardest fighting individuals I’ve seen and most positive when it comes to injuries. They live each day as their last and handle breaks like champs.
As I said in my last post, Tommy and I have been trying to conceive for the last 4 years. One thing I use to be scared of was will my child have OI and if so is it possible for them to have a different, more severe type? During our treatments a while ago I got the opportunity to meet with a Genetic Specialist where they told me:
- There is always a 50/50 chance that the child could have OI
- If the child does, it would be the same type I have.
This was so important for me to hear, as it made me prepare myself in case my child would have a more severe case. No matter what I would love that child, but a child with a more severe type is harder to bring up and I wanted to be prepared.
Even though my disease has made my life a little harder I definitely wouldn’t want to change it. This disease has made me stronger in so many ways, not just physically. I grew up knowing limits and how far to push them. I believe God gave me this disease not as a punishment, but a gift to help others who struggle with it. The strength I have developed has helped me in more ways in life.
If you have OI or know someone with it I would love to hear your story below! Thank you for reading. Next post I’ll be discussing my other and last (haha) disorder and how I dealt with it as a kid.
5 Comments
Thank you for your blog. I have OI though testing was inconclusive as to type. Broken hundreds of bones and currently in a fracture cycle. It’s always nice hearing from others with like condition.
oh wow! I’m so sorry that they can’t figure out the type you have. Living with OI can be hard, I know support can be very helpful. I hope you get some answers soon!
For those who don’t know me, I am Danielle’s older sister and I also have OI type 1.
I always remember Danielle being the one to break bones more easily. In fact, I don’t think I really broke many bones as a child. The first break was my leg at 4 and it was a really bad one. I was playing around in the living room dancing like a ballerina. I spun my leg around really hard trying to spin on my toe. From what I’m told they heard the bones cracking. I had a spiral break all the way up my leg. Because of that break, I actually have one leg shorter than the other, but only by about a quarter inch.
I remember breaking/spraining ankles, fingers, and toes all the time. Especially when swimming at the pool, if I kicked off the bottom too hard it would pop a joint or fracture a toe… Strangely, (for someone with OI) I was very adventurous and reckless up until about age 17 and didn’t break any major bones!!!! That’s really unusual I think.
I vividly remember the time in winter, walking into church when Dad told you not to walk down a slope with ice on it. You did it anyway and slipped. I remember how you had completely SHATTERED your ankle. It looked so bad instantly, all swollen up and disfigured. I can almost still remember your screaming and crying. It was really horrible. I’m sure you remember too LOL. Ugh, if I have a kid with OI someday, I’m going to be such a helicopter mom. xD
My “luck” with living with OI changed when I broke my tailbone. I think I was actually 17 at the time.. but I never went to get an x ray. I pretty much tried to “walk it off”..LOL I knew it was broken and I figured there was nothing they could do anyway. It took 3 months to heal and I couldn’t sit in chairs at school without a pillow or tilting on my side. When it finally “healed” I pretty much went back to normal until I started having pain again… It started in my hips and over the years got worse and worse. Come to find out I had also broken my L5/S1 at some point and never even knew. I’m guessing it was the time I slipped on the stairs and broke the tailbone Or it could be a pars defect that detached at any point of my life. (Moral of the story, if you have OI and you think you’ve broken something, GO TO THE DOCTOR.)
Since then the condition of my spine has deteriorated to the point that I am having to pursue disability. I broke my tailbone again about 4 years ago slipping down stairs AGAIN and the spondylolisthesis progressed to stage 3. Because of my OI I am 29 years old and I have “inoperable” Grade 3 Spondylolisthesis, Degenerative disk disease, Sciatica, Scoliosis, Levoscoliosis and Herniated disks. I may not be as likely to break my arm from a fall or be someone who can say they’ve broke double digit amounts of bones.. but every break I have ever had pretty much impacts me for life.
Living with OI is really strange. You look normal.. people don’t see anything different about you and may not even believe you have an actual disease at all. Most doctors will never see a person with OI in their lifetime, so when they see you and you are their first, they’re usually one of two ways.
One: They get really interested and excited and somehow you end up feeling like you’ve become an exhibit as they anxiously ask questions or call other dr’s and nurses in to tell them I have OI. (lol it’s funny when that happens though)
Two: They shrug it off cause they don’t really know what it is and/or don’t understand enough to take it seriously. (I’ve had a few of these and they were the reason I did not get timely or appropriate treatment for my spine.)
One Dr. didn’t even seem to register the OI and told me my hips hurt because I was a woman and women have wider hips thus a nerve on the hip was irritated. His solution? Stretch.
The next Dr. couldn’t believe that a 19-year-old girl would have back problems like I did. He said it was because I was overweight. He even said it had nothing to do with my OI. Until I insisted he gets an x-ray of my hips after seeing him for two years and complaining of back/hip pain. I still remember the stumped look on his face when he read the report and said “Wow, it looks like you do have something going on there” Yeah, my spine was broken and slipping forward.
Either way, having such an “invisible” and rare disease (unless we break something) can be quite frustrating. You really have to advocate for yourself and even educate every doctor you get. Stand up for your instincts and make sure they take your OI seriously.
I can say one thing though, people with OI certainly have the “Unbreakable Spirit”. We are some of the strongest people you will meet. That is because we have had to be. I love all my OI brothers and sisters because they have suffered the same and still strive to rise above. Stay strong sista, I love you.
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