Osteogenesis Imperfecta is a disorder more commonly known as brittle bone disorder though the effects of it can extend a great deal beyond this. This is what the OI foundation has to say about it : OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues. Here are five facts about OI as I have experienced it.
Note: in the picture to the left I am wearing a thick back brace under my school uniform. This brace basically went form my armpit to my crotch and I wore it full time (minus baths) for six months and then all day (I could sleep without it) for another five. When I was eight and getting my books out of my backpack, I had sharp back pain and dropped my books back into my back and managed to turn myself to slide down the wall to the floor (I was trained from an early age not to fall if it could be avoided as I had had numerous broken bones already). A few of my vertebrae were rubbing together where there was no cushion because they had lost their alignment as I grew. I was diagnosed with OI after this happened.
1. When I was first diagnosed there were only four levels of OI related to us but four additional types have been added based on dental issues as I last understood. They are not numbered on a scale of one-to-four in terms of intensity, but if they were, I would have the second type, not the lightest, but two levels away from the worst. However, it is known as Type IV in OI parlance.
2. I haven’t seen a specialist since I was 14 years old. When I was 14, the state of Louisiana took away my government provided medical insurance in an overall purge of their medical card rolls (a friend of mine who was an extremely insulin dependent diabetic also was purged at this time). I didn’t have insurance again until the CHIP program started but I never saw a specialist under that coverage and lost it when I turned eighteen. After that I couldn’t get affordable healthcare as an adult until the Affordable Healthcare Act formed the pre-existing condition pools.
I have had this insurance for a year and could have seen a specialist in this time period but delayed because we were planning to move but ended up staying put until we found the right house in the right place. When you have a rare disorder, you typically have to educate a GP about the disorder and he can then refer you to a specialist so that it will be unequivocally covered by your insurance. I was hoping to avoid visiting a GP here and educating him or her only to have to do so again when we relocate. I have decided that if we don’t move by early summer, I will get this ball rolling regardless. As it is right now, I haven’t had any large pressing issues though I am getting old enough now to need regular visits for monitoring.
3. Osteogenesis Imperfecta led to at least 16 breaks in my youth. I don’t know for sure because I don’t have a copy of my medical file and my mom lost count. My goal this year is to become fully in charge of my condition now that I have insurance. Since my teen years, it went into what I will call the standard remission most of us experience when our bones are stronger because we are at peak health. This will all begin to change sometime soon, and that is what I mean above by the need for consistent monitoring.
4. Dealing with pain is part of my life. I have little aches and pains from time to time that I deal with without medication or doctor’s visits as they have not yet progressed to chronic or alleviated on their own with time. I feel like a lot of this may because I exercised handily for a solid year up until a knee injury while running a few years ago. I think I built up my body pretty well and need to work on this again in an attempt to stave off the inevitable as long as possible. The only ache I must treat when given the opportunity is the beginning of some TMJ pain I first experienced in the final weeks of 2011. My current health insurance does not cover any type of maxillofacial surgery (and few do), so until early 2014 when I can buy private insurance despite my condition and perhaps pay extra for a policy that will cover these issues, I will have to deal with occasional bouts of jaw pain. It is a larger issue because I have an underbite that needs permanently corrected with surgery.
It is also possible I will go to work for a payroll company if I can get dental and health benefits, so that I can have these issues treated….but with the current hiring climate, I don’t hold out much hope for stellar benefit plans even if they are offered. Despite the fact that I do ache, I always feel guilty about it because I know so many people with OI have it much worse and live in constant pain, require wheelchairs their entire lives, or at least by my age. I have avoided these issues thus far, but I also have to live with the fear of when. One lady commenting on a Huffington Post article written by a young man with a worse variation of OI than mine has made it into her 60s working and able to walk, but it is possible she has the least version of the disease.
5. I am a genetic mutation. No one on either side of my family had Osteogenesis Imperfecta. Unless OI was there from several generations back and everyone down to me was only a carrier, I am the first thanks to a fluke at conception. This means I have no real entirely sympathetic support in my family. While they love me and have cared for me greatly, they cannot quite relate to the idea of carrying something with you that you are all at once okay with because it is all you have ever known but also constantly afraid of because it can end up taking you anywhere as you age. I’m looking forward to graduating college at the age of 30 but also afraid because “the thirties” were always held up as the big downhill slide into bone and joint deterioration for me.
So….that is an education on my OI in five easy lessons. Here are a few good links to others who have blogged about this. These aren’t for the newly diagnosed (since most of us are diagnosed in our childhood – I was 8 when diagnosed), but for those looking for support as they cope with the disorder:
Growing Up Fragile by Drew Kirk (this is the story I read last year that featured the comments from other OI sufferers. I commented several times at the time this article was published but have since deleted that Huffington Post account).
3-Foot Woman Delivers Healthy Baby (a great story about a woman with OI having a baby. This is uncommon because OI is common, but even among OI sufferers it is rare for someone with her type to give birth). I am 5 feet tall, but I come from a family of generally tall people and that probably helped me some as did having a lesser type. Like this woman, I could give birth to a baby without OI, there is a 50/50 chance of my passing it on. I found all of this out on my last visit to a specialist at age 14.