They All Thought I was a Klutz!

The story of growing up with OI while being actively involved in sports.

It all began at age three when I broke my arm when falling while chasing the ice cream man. In the next several years, I subsequently broke my arm when slipping on a wax floor, while wrestling with my brother, twice while playing football, while playing soccer goalie, and once upon a fall.

Doctors recommended calcium supplements to strengthen my bones and to drink more milk, but nobody had an explanation. I was basically told I was a klutz and accident prone. I broke my right arm five times before my tenth birthday and it grew so crooked that people would always ask me to show them my arm, as it made people cringe and laugh (kind of like a circus act).

At age 13, I formed a cyst the size of a golf ball in my leg. It pressed against the smaller bone in my leg and broke it. I had surgery to remove it. After numerous broken fingers and a broken ankle, I broke my wrist in camp at age 14. I can still remember how a counselor in camp, upon hearing about my past, told me I would probably die before my 21st birthday; not the nicest thing to say to a fourteen year old.

By my seventeenth birthday, I had broken approximately fifteen bones, but soon graduated from the School of Broken Bones (I have not broken a bone in 25 years) and advanced on to the School of Torn Tendons. Prior to my eighteenth birthday, I ruptured by Achilles tendon. I was given a choice of surgery or not, since it was hanging on by threads. I decided against the surgery, a decision which I now regret, as I can still feel pain there and have a big knot 25 years later.

A few years later, I suffered an accident while playing football. After a ball deflected off my finger, I noticed I had no control or movement in my fourth finger. It was the weirdest thing as it did not really hurt but when I made a fist, my fourth finger would remain pointed upward and would not move. It turned out that both tendons attached to the finger ruptured off my finger and rolled down to my wrist, which required surgery to have them reattached. My new doctor, Dr. Hillel Scott in Boston, stated that it was a freak thing and that upon research, no such injury had ever been reported where both tendons ruptured off a finger and rolled down to the wrist. After learning my history, he asked if I had ever heard of OI. I had not.

He ran some basic tests and noticed the sclera of my eyes are gray, my joints are extremely flexible, and I have deficient hearing; all symptoms of OI. Finally, at age 24, I was told I probably had Type I OI.

For years, one of my true joys has been playing fast pitch softball, and despite numerous aches, pains, strains and pulls, I have been willing to live with the consequences of participating in something I love. Over the last twenty years, I have torn my hamstring several times, ripped some ligaments on my small finger (which resulted in mallet finger), tore some ligaments in my knee and had arthroscopic surgery. Most recently, a month ago, I ruptured my quadricep muscle in another random freak accident simply by slipping on a wet floor and required surgery to reattach it to my knee.

Despite all the trials and tribulations, the worst part was when I found out my beautiful daughter, Emma, also has Type I OI. We found out when we had special tests run during the amniocentesis process before she was born. Nothing was more painful than seeing my daughter break her leg in two places in an accident at her doctor’s office during her two year-old physical. Emma is now three and a half and she recently suffered a mild fracture in her right arm.

I am grateful to the OI Foundation for their help and making me aware that my daughter and I are not alone. I realize how fortunate I am that I only have the mildest form of OI and, despite my camp counselor’s comments years ago, I am still here and have a lot to look forward to and live for; particularly my beautiful daughter Emma, as we both continue to cope with, learn about, and deal with Type I OI.

 

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