Name : Maria Cristina Schillen
E-mail : mariaFN@aol.com
Adult: 63 years old
Location: Davie, FL
Area(s) affected: Left leg
I was diagnosed with Melo when I was about 10 years old. My grandmother noticed that my right hip was higher. I was diagnosed with scoliosis. Then I was diagnosed with Rheomelestosis and or Melorheostosis.
In 1960 in Cuba, I was treated by Dr. Pascow. I was under his care for 3 years. He placed pins thought my calcaneus bones and plaster both of my legs to accelerate the tibia and femur approximation, and therefore prevent linear bone growth, hence I have been the same height since I was 12 years old.
When I was 14, I had a left hip biopsy and a full body cast in Caracas Venezuela, as a result I have a left posterior thigh indentation. Don't know what was the reason of the surgery.
I did not seek medical care for many years since on one knew what I was talking about.
I have been followed in Miami for the last 10 years by Dr. Ritter. I see him once a year. He orders X-rays to monitor the progression and prescribes NSAIDS for the pain. The x-rays show the typical wax appearance tissue ossification/calcification on the distal femur.
My left leg is shorter, I have pain on the distal lateral aspect of the femur at times. Sometimes the pain is sharp and very strong. I am a very active person. I exercise daily. (I am in the Air Force Reserve) If I stop exercising my leg becomes stiff and I have difficulty getting up from a chair.
Years ago when I was in George Mason University ( 1980') I did some research on this anomaly, I came across many French articles but nothing in English or written in the USA. I came to believed that I was the only person in this country afflicted with this. Therefore I stop and never looked again.
Today I am having much pain I was getting scare, therefore I decided to make an appointment at Cleveland Clinic Weston.
Since every time I seek medical attention, no one seems to know about it (someone once told me I had Paget's) I decided to look in Merck Medicus to take some info with me to my appointment, and, did not recognized the name. Than I decided to Goggle it and I came up with your organization.
That is my abbreviated story.
my e-mail :
3220 SW 117 Ave
Davie, Florida 33330
Feel free to call me, I don't know what else I can said to help with the research.
Tailwinds and Fair Skies
Maria Cristina Schillen MD,MS,ARNP-BC,MT-ASCP
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