Showing posts with label OI medical care. Show all posts

A Case of Medical Advancement Envy

Being a 20something can no longer be considered "young." People like to tell me that I am "so young, you have a lifetime of opportunities ahead.." while this may be true in some aspects of my life, it is definitely not so in the areas of medicine and science.

Science happens faster than a blink of an eye. Right now, a scientist or 'lab geek' somewhere might be handling micro-organisms that will have an impact 1,000 times its actual size. The rate at which medical advancements happen can mean the difference between an early 20something in a wheelchair vs. a child of 7 or 8 who runs freely. Those two individuals were diagnosed with the same genetic condition, the same form of the condition, presented with similar fractures at birth, and yet because one was born ten years earlier she got the benefit of time and learning on her side. As I'm flicking through pictures on various O.I. groups on Facebook, there are hundreds of examples of what I just described. This is not the stuff of science fiction or made-up case studies that medical students pour over, it's real life!

Evidence of the enormous difference between ten years of science doesn't even need to be revealed between two people, I have proof of this right on my own body. In third grade I had my first rod operation on my right tibia; since I was still growing at the time my orthopedic surgeon inserted a K-wire along the bone. After the operation I had scar tissue along my front shin, the pale pinkish scar was like one of those garden vines that grow along fences - mine snaked along the path of my formerly bowed tibia. About ten years later I was graduating from college and had the procedure done on my left tibia. Except this time I was no longer growing. The surgeon inserted screws, a metal plate, and a rod into my left tibia - there were several osteotomies done and the operation took almost 5 or 6 hours. Despite all the hardware that went into my leg ten years later I was out of the hospital in two days. I resumed normal day-to-day life routines in about three days, and was out of the full leg cast in about three or four months.
The point is not how quickly I pleaded to get up and about again, but when my cast was taken off the scar tissue was barely noticeable. Not only that but it was straight - ramrod straight as if my surgeon had made the incision with a ruler. I'm sure he didn't actually use a ruler, but I was amazed at the difference between ten years on my legs. Precision, accuracy, healing time, managing other risks, and the cosmetic impact post-surgery seemed to have evolved right before my eyes!

If you were to ask me whether or not I'm envious of those young'uns who are running about now with O.I. type III, my answer is hell yes! Of course I am jealous of all that they are able to do and the childhood that they are able to experience because of their abilities! But I think that this is all a part of the cycle of life... or something of the sort. We are supposed to be getting older. Younger generations are supposed to be 'better' than us. I am just grateful that science is making improvements for others, that progress is being made for those who were told that we would never live past two. I guess I'll just have to accept all of that with some amount of grace and amused cynicism :-)

In the mean time I'll be practicing my 'grumpy old person' voice:"When I was your age I had to carry my x-ray files back to the doctor after the x-ray in a gigantic folder that weighed 40lbs! So quit the cryin' or I'll give ya something to really cry about!" 

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A Different Perspective: Breaking Barriers Thru Generations


I 'met' R through twitter and was intrigued by his story of adapting to O.I. in a totally unconventional manner! The most interesting part of R's story is how he approaches his own son's medical care based on his own experiences. 


I'm stubborn.  All my life, I have refused to let OI Type I beat me.  I have Type I OI, as do my four siblings, their kids, and their grandchildren.  It all started with my mom. 18 people in all, with three more in the womb that haven't been tested yet.
I played sports, I've trained in martial arts for 30 years, and I've done some pretty insane things that make my doctors want to slap the stupid out of me as they're casting my latest fracture.  My mom was always the worrier.  My dad made a career out of the Marine Corps and while he would worry as well, there's part of me that deep down thinks he's proud I did what I could to adapt, improvise, and overcome.  If you count fingers, toes, and ribs, I've had over 30 broken bones in my life.  I've had my right ankle, my right hand, and my nose reconstructed.  Considering everything I've done to myself, this number is shockingly low.  What's even more shocking is I have to give credit to my martial arts training.  Sure, most of those finger, toe, and rib fractures were because of it, but it taught me how to fall.  As we can all attest to, falling is one of the scariest things those of us with OI can do.  One doctor speculated that I probably have had a lot more hairline fractures but the pain tolerance I've built up has "hidden" them from me.  It's quite possible.

I never fully understood what I was putting my parents through until I had a child of my own.  When my son was four months old, he ended up in the hospital with four broken bones: right tibia, left femur, and two ribs on the left side.  Rather than do any kind of surgery they put him into a wheaton-pavlik harness while he healed. Shortly before his second birthday, he broke his left femur again when he slipped and fell on the kitchen tile.  That time, they opted to put a removable rod into his leg to help set it right.  The day after he got the rod removed, he slipped and fell again and broke his right tibia for the second time.  He's five and a half now and hasn't had any more fractures since.   Despite the four leg fractures, he's growing pretty tall for a kid his age.
I’ve been putting some serious thoughts into whether or not I train my son and at what age I start him at.  As a parent, I’m worried sick that he’ll get hurt and then I’ll feel horrible for being responsible for it.  As someone that’s been teaching people for years, I’m pretty sure that I can create a program suited for him.  I started training when I was six and he turns six in September.  In the coming months, I plan on talking with his doctor about it.  Maybe there’s some exam schedule we can run along with it. There's part of me that worries that it'll just lead to more leg fractures in the future, but all I can do is provide the understanding and support for what he's going through.

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