Name :    Darlene Pry

E-mail :  pryspry@aol.com

Adult: 54 years old    

Area(s) affected:  left tibia, femur, knee

Personal History:
 
My name is Darlene Pry.  Iím 54 years old.  Today I learned that I have Melorheotosis.   I was first told that something wrong when I was 14 years old.  I have been monitoring this condition over the years with x-rays, but was never given a name for it until today.  Itís a great feeling to finally know what I have.  Even though Iíve learned there isnít a cure, Iím glad to finally know there is a name for it.   I live in Port St. Lucie, FL and traveled  to Gainesville, FL to finally get a diagnosis.  I saw Dr. Scarborough who is an orthopedic oncologist.  In the past I have been seen by orthopedic doctors but was never told what this is.  They would say thatís itís unusual looking and to just have x-rays done every so often to make sure that it was not getting worse.
 
The Melorheotosis is in my tibia and femur of my left leg affecting my knee.  When I was younger I was discouraged from participating in any physical activities that would cause any more pain than just from normal use. This has pretty much been a way of life.  If my leg is straight for a long period of time my knee bothers me.  If my leg is bent for too long, it bothers me.  The only medications that have been recommended are anti-inflammatory.  
 
Iíve had a full body scan and thankfully my left knee is the only area affected.
 
Being ďone in a millionĒ has made it difficult over the past 40 years to relate this condition with anyone else.  Thank you for this website and learning that I am not alone.  

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