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. I’m 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. It’s a great feeling to finally know what I
have. Even though I’ve learned there isn’t a cure, I’m 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 that’s it’s 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.
I’ve had a full body scan and thankfully my left knee is the only area affected.
Being “one in a million” 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.