Name :    Donna Nakhle

E-mail :

Adult:    61 years old     

Location:  Cary, NC

Area(s) affected:  Right leg, right foot, right shoulder

Personal History:

After reading some other stories, I can't help but notice how similar each story was with another.  I grew up in Florida and it was a grandmother that noticed one leg shorter than the other.  I was active in horseback riding and gymnastics, but noticed that certain gymnastic moves were easy in one direction while in the other direction they were hampered and not easily accomplished.  With every fall or injury, pain would increase and last for quite a long time.  The pain accompanied with the physical appearance that my grandmother noticed prompted my mother to take me to a doctor.  At that time it was discovered that I had scoliosis and leg length discrepancies.  I wore a "Milwaukee" body brace for two years in high school to straighten the bones, but was told to endure the pain that is usually coupled with the spinal curve.  For years the doctors thought that the spinal curve was a result of a bad polio vaccine. 

Years later around 1985 I went to my family physician for extreme pain and discomfort in the right thigh and leg.  He x-rayed and told me that it appears to be tumors up and down my leg and that my leg might be amputated.  He sent me to Duke University where I was finally diagnosed with Melo. At this time there was no Association and doctors had very little to no knowledge of the disease.  Thank you to the Association for the work you have done for those people that need answers and help.  I wanted to add that after all these years I noticed that the bone grows faster after it has been traumatized or injured for me.  I don't know how many others have noticed this too.  It is almost as if it over compensates for injury.  If I keep my weight down and exercise by walking regularly, the pain in my leg doesn't seem as bad or uncomfortable.  My pain, I believe, is coming from pinched nerves and not so much the actual growth. 

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