Chapter One: Orthopedics
Section One
ABC’s of MHE: Diagnostic Tools and How MHE Can
Affect Each Part of the Body
Contributors: Harish Hosalkar, MD, John Dormans, MD, Children’s Hospital of Philadelphia; Sarah Ziegler, Susan Wynn, Chele Zelina, The MHE Coalition
Section Two
Multiple Exostoses and the Lower Limb
Reprinted from The MHE Coalition Newsletter No. 14, June 1, 2003
Contributor: Dror Paley, MD, Director, Rubin Institute for Advanced Orthopedics; Co-Director, International Center for Limb Lengthening; Professor, University of Maryland School of Medicine
Section Three
Multiple Exostoses of the Forearm
Contributor: Dror Paley, MD, Director, Rubin Institute for Advanced Orthopedics; Co-Director, International Center for Limb Lengthening; Sinai Hospital of Baltimore
Chapter Two: Genetics
Section One
The Genetics of Hereditary Multiple Exostosis (HME)
Contributors: Sandra A. Darilek, MS, Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX; Jacqueline T. Hecht, PhD, Department of Pediatrics, University of Texas-Houston Medical Center, Houston, TX
Section Two
The Genetics of Multiple Hereditary Exostoses - A Simplified Explanation
Contributor: Wim Wuyts, Ph.D., Supervisor, DNA Diagnostics, Department of Medical Genetics, University and University Hospital of Antwerp, Belgium
Section Three
Genetic Testing: Laboratories and Forms
EXT1 and EXT 2 Gene testing at the Department of
Medical Genetics, University of Antwerp (Belgium) (PDF)
Chapter Three: Living with MHE
Section One
The Emotional Implications of Chronic Illness on MHE Patients
and Their Families
Reprinted from The MHE Coalition Newsletter No. 5, March 1, 2001
Contributors: Ronni Michelson, MSW, LSW; Susan Wynn, The MHE Coalition; Cathy Lloyd
Section Two
Physical Therapy for Patients with Multiple Hereditary Exostoses
Contributor: Elena McKeogh Spearing, MA, PT, DPT, PCS, Physical Therapy Manager,
Children’s Hospital of Philadelphia
Section Three
Products and ideas to help make living with MHE a little easier…
Reprinted from The MHE Coalition Newsletter No. 17, December 2004
Contributor: Susan Wynn
Section Four
Preparing for your Next Medical Appointment
Reprinted from The MHE Coalition Newsletter No. 16, June 2004
Section Five
MHE Surgery: Some helpful tips and advice from families
who have been through it
Reprinted from The MHE Coalition Newsletter No. 10, June 1, 2002
Chapter Four: MHE and Pain
Section One
Hereditary Multiple Exostoses and Pain, Abstract of Study Published in Journal of Pediatric Orthopaedics
Contributors: Sandra Darilek, MS, Catherline Wicklund, MS, Diane Novy, PhD, Allison Scott, MD, Michael Gambello, MD, PhD, and Jacqueline Hecht, PhD
Section Two
American Pain Foundation – Pain Action Guide
Reprinted with permission of The American Pain Foundation; Appeared in The MHE Coalition Newsletter 7, September 1, 2001
Section Three
Evolving Views on Opioid Therapy for the Management of Chronic Pain. Pain Killers (Analgesics): Panacea, Poison or Somewhere in Between
Reprinted from The MHE Coalition Newsletter No. 8, December 1, 2001
Contributor: Richard B. Patt, MD
Section Four
Reflex Sympathetic Dystrophy Syndrome: An Overview
Reprinted from The MHE Coalition Newsletter No. 9, March 2002
Contributor: Susan Wynn
Chapter Five: MHE AND CHILDREN
Section One
The Bumpy Bone Survival Guide
Reprinted from MHE and Me, www.mheandme.com
Section Two
The MHE and Me Handbook: A Guide for Family Friends,
Teachers and Classmates
Reprinted from MHE and Me, www.mheandme.com
Section Three
Common School Concerns for Students with MHE
School Needs Checklist for Kids with MHE
Reprinted from MHE and Me, www.mheandme.com
Chapter Six: Chondrosarcoma
Section One
A Patient’s Guide to Chondrosarcoma
Reprinted with permission from www.geocities.com/chondrosarcoma
Contributor: Elizabeth Munroz, Author and Webmaster of "A Patient's Guide to Chondrosarcoma Website); " (www.geocities.com/chondrosarcoma) Moderator, Yahoo Chondrosarcoma Support Group; Founder and Webmaster of website outlining her personal story of MHE and Chondrosarcoma. Reprinted with permission of the author.