Being Different

The story of Donna

Always knew I was different, but never knew anything other than “I was born with this.” The typical symptoms of NPS (fingernails, elbows, tiny-baby-sized patellas [in my case]) were present at my birth, no one knew what I had.

When I was around 8 to10, my parents consulted a pediatric orthopedic doctor to find what could be done about my “tiptoe walking” and my foot supination. There had been talk about cutting a wedge out of both my heel bones. Decided against due to the long recovery time I would be out of school, I believe–possibly financial issues also. In elementary school, I was accused of biting my fingernails by a visiting teacher who moved quickly away & down the line, after I indignantly denied that and said I was born this way. I knew I could not run or stand as long as classmates and wished by jr. high that I could have collected a nickel every time another child (or adult) asked me about my fingernails, esp. the thumbs.  

It wasn’t until I was married and after we had our first child before I found about my disease.  My doctor found an article describing NPS in a medical journal in the mid-1990s (in his off-hours) and he realized that he had one patient with this–me! With both our children there was no doubt they had it also, as they “had the thumbs” — the basic defining characteristic.

As I’ve gotten older, I’ve gotten osteoarthritis in both elbows; my right knee especially gives me trouble with various weather patterns; I can’t take any NSAIDs for pain control as my kidney is giving out warning signs. As it was the whole of my life, I cannot extend my arms out “straight” as the elbow is at 170° angle and they can lock momentarily due to floating bone fragments. There are others who have worse cases–e.g. my son has just a little enamel on his teeth and my teeth seem to be unaffected by the gene mutation.

Being different is a mindset–being special regardless of that mindset is ideal.