A Support Group for Kids with Multiple Hereditary Exostoses and their Families MHE and Me is a proud member of THE MHE COALITION (www.mhecoalition.org) The MHE Coalition is a 501(c)(3) non-profit organization dedicated to finding the causes, treatments and ultimately the cure for MHE, and to providing support and information to families living with this rare bone disorder.  Please visit the MHE Coalition web site to learn more about MHE.   The ABCs of MHE provides a resource for MHE patients, their families, and their health care providers, with chapters on Orthopaedics,  Genetics, Living with MHE, MHE and Pain, MHE and Children, and Chondrosarcoma. When you visit the site, please be sure to sign in to the member map, a fun way to see where in the world people are living with MHE!

Whether you are a kid with MHE looking for new friends who understand what it's like to live with bumpy bones,  the family of a child with MHE looking for information, or a medical provider trying to understand some of the life issues faced by your MHE patients,  this site was created for you!  MHE and Me was started in July 1999 and the web site has grown beyond our wildest expectations, with children and families from throughout the world contacting us.  We continue to give kids a place to express themselves through their writings, poetry and art, and we also continue to develop tools to help families deal with medical and school issues.  Susan Wynn, Co-founder, Director & Webmaster mheandme@yahoo.com

MHE and Me UPDATES:

MORE PARTICIPANTS NEEDED: "The health related quality of life in patients with hereditary multiple exostoses" study being conducted by Dr. Christine Alvarez, MD, FRCSC, MSc, The University of British Columbia, British Columbia's Children's Hospital, is still accepting participants. Children and adults diagnosed with MHE/HME/MO are welcome to participate in this questionnaire study which is attempting to establish how the lives of people with MHE are impacted and to develop a disease specific questionnaire.   Please contact Harpreet Chhina, Study Research Coordinator, at hchhina@cw.bc.ca and she will send you an Information and Consent Form for your review and signature.   Parents or guardians may fill out the forms for children, so we hope that many of you will use this opportunity to share how MHE effects your child's daily life.  WE CARE PROGRAM: If your child is having surgery and you'd like us to send a We Care Package, please email Susan Wynn at mheandme@yahoo.com with your child's name, age, address, type and date of surgery, and the names and ages of siblings (because we care about them, too!) BUMPY BONE CLUB MEMBERSHIP KITS: Almost 200 children and teens throughout the world are now members of The Bumpy Bone Club.  Membership kits have been mailed to members throughout the United States and in Australia, Canada, England, Finland, Hungary, India, Ireland, Israel, New Zealand, Norway, Poland, Scotland, Spain and Uruguay. Whether diagnosed with MHE or a sibling, cousin, child or good friend of someone with MHE, all children and teens are invited to become members. Membership is free and kits include a membership certificate, special Bumpy Bone Club items, and The Bumpy Bone Club Magazine, written for and by kids and teens.  Bumpy Bone Club members will be encouraged to contribute to further issues of this magazine, which members will receive  in the mail. To sign up, please email Susan at mheandme@yahoo.com with your child(ren)'s name(s), age(s), and address and whether the child(ren) has MHE, or is a sibling, etc. The MHE Coalition wishes to thank the family and friends of Gerald Feldman for donations made in his memory, which made the Bumpy Bone Club possible. GATHERINGS:  These annual gatherings are sponsored by The MHE Coalition to give individuals and families the opportunity to meet others living with MHE and share information and experiences.  Children benefit greatly from having the chance to spend time with their peers and play in an atmosphere of understanding and acceptance.    The following Gatherings have been planned for Summer 2009: • Saturday, July 25: o The Eighth Annual Northeast Gathering, Pine Island, New York.   This year we are pleased to be welcoming a delegation from Norway who will be attending the Gathering as part of a week-long conference on creating an MHE support network, with an emphasis on the many issues faced by children with MHE and their siblings.  We hope that many of you will attend the gathering and welcome the Norwegian families!  Please email Susan for information and/or to RSVP at mheandme@yahoo.com, and put “Gathering” in the subject line. o The First Annual Southern Gathering:  We were delighted when Ruth and family volunteered to host the first Southern Gathering, which will be held in Chesapeake, VA. For more information and/or to RSVP, please email Ruth at mhesoutherngathering@yahoo.com • Saturday, August 15: o The Second Annual Midwestern Gathering. The first Midwestern Gathering was such a success, that Kris immediately signed on to host another this year!  The Midwestern Gathering will be held once again in Waterford, Wisconsin, which is near Milwaukee and not far from Chicago. For more information and/or to RSVP, please email Kris at  midwestgathering09@yahoo.com. In addition, a Southwest Gathering is being planned for Phoenix, AZ and more details will be forthcoming.  In the meantime, if you are interested in a southwest gathering, or would like to help our host, Jack, with the event, please email Susan at mheandme@yahoo.com and put “Southwest Gathering” in the subject line. We are also working on a possible gathering for Washington.  If you are interested in hosting a gathering in your area, please contact Susan for more information. We will be posting information on the Coalition Website with hotel and motel information and tourist attractions.

SITE INDEX

MHE and ME Resources: This section of the Site includes The Bumpy Bone Club Survival Guide: Tools for kids to use with their families, doctors and schools to help keep track of bumpy bones, doctor's appointments, surgeries, and pain, and to help get needed modifications  and accommodations at school.  We've added some reprints of some helpful articles from The MHE Coalition Newsletter.

The Bumpy Bone Club: Kids and teens write about living with MHE, and share their  Poems, Essays  and Art Work .  Please keep visiting - we often have new members!

The We Care Corner: Writings, Poems and Art Work by Family and Friends of kids with MHE

Grown up MHE'ers share Their Bumpy Bone Stories and Advice with kids with MHE

MHE Links:  Sites to help your child cope with chronic illness, teasing, depression, chronic pain and other issues; MHE organization links;  Helpful products recommended by kids and parents. New Links to help you prepare when your child needs surgery.

Prior to our site makeover on August 28, 2003,  MHE and Me received over 9,000 hits!

This site was last updated on May 15, 2009

DISCLAIMER While many find the information and experiences that we share helpful, it is in no way a substitute for professional medical care. Our support network does not engage in the practice of medicine. In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.

MHE and Me Privacy Notice

(c) 1999-2009. All rights reserved. No part of this website may be used or reproduced in any manner whatsoever without written consent of MHE and Me,  mheandme@yahoo.com, PO Box 651, Pine Island, NY 10969-0651.