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:  We're now mailing out  membership kits to children affected by MHE. 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 will include a membership certificate, special Bumpy Bone Club items, and The Bumpy Bone Club Magazine, written for kids and teens.  Bumpy Bone Club members will be encouraged to contribute to further issues of this magazine, and will be encouraged to contribute to further issues of this magazine, and members will receive future issues 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: The MHE Coalition is sponsoring Gatherings in the Northeast, Midwest and Pacific Northwest on Saturday, August 9, 2008. The Northeast Gathering will be held in Pine Island, NY; The Midwest Gathering will be held in Waterford, WI;, the Southwest Gathering in Phoenix, AZ; and the Pacific Northwest Gathering will be held at the Maple Bay Picnic Area, Cultus Lake, British Columbia.  To RSVP or for more information on the gatherings, please contact: Northeast:  Susan at mheandme@yahoo.com Midwest:     Kris at midwestgathering08@yahoo.com  Southwest:  Jack at mheswgathering@yahoo.com Pacific Northwest:  Anita at mhegatheringcanada@yahoo.ca If you would like to host a gathering in your area, please contact Susan.

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 June 20, 2008

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) 1999-2008. 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.