Melorheostosis Association Brochure

© Copyright 2001—2014  Melorheostosis Association.  All rights reserved.

Text Box: Facts in Brief
What is melorheostosis?  With  an  estimated  incidence  of  1:1,000,000, melorheostosis is a rare and progressive disorder characterized by thickening of the bone, also affecting the joints and overlying soft tissue and skin. Melorheostosis can result in severe functional limitation, extensive pain, soft tissue contractures (malformed and/or immobilized joints, tendons, ligaments), and limb, hand and/or foot deformity.  The age of diagnosis is typically based on severity of onset and symptoms.  
How is melorheostosis diagnosed?  X-Rays are the preferred diagnostic tool.  X-rays often reveal a pattern of thickened bone that can look like dripping candle wax, particularly in adults. 
What areas of the body are affected?  Melorheostosis usually is found in the arms and hands (upper quadrant) or legs and feet (lower quadrant). It can present in one extremity of either the upper or lower quadrant, can be bilateral   upper or lower, or evidence itself in all quadrants.  The disease can affect the pelvis, hips, sternum, ribs, and more rarely, the spine and skull. 
What is the cause of melorheostosis?  The cause is currently unknown.  Current research is moving  us closer to being able to answer this question.
Is surgery an option?   Melorheostotic bone and soft tissue often do not react as unaffected tissue would to traditional surgical interventions.  If surgery is being considered, the patient and surgeon may wish to consult the “Surgery” link on the Association website to view a medical paper (written by one of our Panel Members, Dr. Jeffrey King) containing important information on surgical management.  
What is the treatment and long-term prognosis?  Treatments  are limited and often fraught with concern for patients and doctors alike. No treatment option has been found to be fully effective, and what may be helpful to one may be ineffective or even detrimental to another.  Treatment options include surgery, physical and occupational therapy, hydrotherapy, and medications to alter the bone remodeling process.   
As melorheostosis moves into a progressive state, pain management is one of the toughest challenges patients face. Medications available for pain include NSAIDs, steroids, narcotics, and occasionally, biphosphonates. These medications are sometimes helpful in the early stages of the chronic progression, however, less so for the severely afflicted.  Due to its rarity and the lack of effective treatment  options, long-term prognosis cannot be accurately predicted.
Text Box: Mission Statement
The Melorheostosis Association is a not-for-profit   organization dedicated to finding the cause, treatments and cure for melorheostosis.  Our focus is on promoting greater awareness and understanding of this progressive disease and its manifestations through education,  research, communication and advocacy efforts on behalf of those affected by it as well as those dedicated to alleviating it. 
Text Box:  X-Rays Demonstrating Melorheostosis in the 
Hip and Hand

wwwmelorheostosis.org

Historic Melorheostosis

Association Conference

as everyone joined the ever-“family.”For more photos click here.

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The Melorheostosis Association, a 501(c)(3) charity, has held 5 conferences, funded research, initiated a tissue repository at the NIH, gathered the world’s largest database of patients and established a world renowned Medical Panel. Every member of our Board of Directors is either a patient or the parent of a patient. 

We are an all-volunteer association.  Every dollar you donate goes directly to our mission to find the cause, treatments and a cure and is tax deductible.  You can donate via PayPal on our website or mail a check directly to:

Melorheostosis Association                                                                                       410 East 50th Street
New York, NY 10022 

Please visit our website — www.melorheostosis.org — for additional information as well as a short video about melorheostosis which includes a statement by Medical Panel Chair Emeritus, Dr. Frederick Kaplan. We welcome your interest and any questions you may have.
Text Box: Board of Directors

Jennifer Gordy, President
Kathleen Harper, Chairman
Joanne Chapman,  Treasurer 
Amanda Shapiro, Secretary
 
 

Melorheostosis Association
410 East 50th Street
New York, NY 10022

kathleen@melorheostosis.org
www.melorheostosis.org

© Copyright 2009-2013  Melorheostosis Association.
All rights reserved.

They are 1 in a 1,000,000

Text Box: Scientific/Medical Advisory Panel
Dr. Geert Mortier, M.D., PhD, Chair
Professor of Medical Genetics at University of Antwerp and Ghent University
Director, Department of Medical Genetics
Antwerp University Hospital, Belgium 

Dr. Fred Kaplan, M.D.,  Chair Emeritus
Isaac & Rose Nassau Professor of Orthopedic Molecular Medicine
Chief, Division of Metabolic Bone Diseases & Molecular Medicine
Department of Orthopaedic Surgery, University of Pennsylvania

Dr. Henry G. Bone, M.D.
Director, Michigan Bone & Mineral Clinic
Head, Endocrinology Division
St. John Hospital & Medical Center

Dr. Bart L. Clarke, M.D.
Associate Professor of Medicine
Mayo Clinic, Rochester, MN

Dr. Francis H. Glorieux, M.D., Ph.D.
Professor of Surgery, Pediatrics & Human Genetics
McGill University
Director of Research, Shriners Hospital for Children, Montreal 

Dr. Jill Helms, PH.D., D.D.S.
Associate Professor, Plastic and Reconstructive Surgery
Stanford University

Dr. Jeffrey C. King, M.D.
Clinical Assistant Professor, Michigan State University
Health Care Midwest, Hand & Elbow Surgery 
Dr. Salman Kirmani, MBBS
Assistant Professor of Medical Genetics and Pediatrics
Mayo Clinic. Rochester, MN

Dr. Peter Klein, M.D., Ph.D.
Associate Professor of Medicine & Cell and Developmental Biology
University of Pennsylvania 

Dr. Laura McCabe, Ph.D.
Associate Professor, Department of Physiology
Department of Radiology, College of Osteopathic Medicine
Michigan State University
Dr. Vicki Rosen, Ph.D
Professor and Chair, Developmental Biology
Harvard University

Dr. Eileen M. Shore, Ph.D.
Associate Professor of Orthopaedic Surgery & Genetics
University of Pennsylvania

Dr. Ethel Siris, M.D. 
Director, Toni Stabile Center for the Prevention & Treatment 
of Osteoporosis, Columbia-Presbyterian Medical Center
Metabolic Bone Diseases Program, Columbia University

Dr. Andrew Weiland,  M.D.
Professor, Orthopaedic & Plastic Surgery
Weill Medical College, Cornell University

Dr. Michael Whyte, M.D. 
Medical-Scientific Director, Center for Metabolic Bone Disease & Molecular Research, Professor of Medicine, Pediatrics & Genetics 
Division of Bone & Mineral Diseases
Washington Univ.  School of Medicine

Dr. Howard Worman, M.D.
Associate Professor of Medicine
Columbia University

Dr. Michael Zasloff, M.D., Ph.D.
Professor, Research & Translational Science
Georgetown University Medical Center