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MHE (Multiple Hereditary Exostoses) And Me
A Support Group for Kids with Multiple Hereditary Exostoses and their Families
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.
MHE and Me UPDATES: COME VISIT OUR NEW STORE AT www.cafepress.com/mheandme. Nicole Wynn, who created Cards from the Heart at age 11 and is now in her third year as a Graphic Design Student in college, has created a store for us at Cafe Press, featuring her new MHE and Me and Bumpy Bone Club Logos for clothing and gift items for everyone in the family. All profits go to The MHE Coalition to help support our programs for children. These items make great gifts, and you can show the world that you support The Bumpy Bone Club and MHE and Me! We hope you'll visit and consider doing some of your holiday shopping at our international store!
Quality of Life Study Update:
Thank you to all who responded to our request for participants for the Quality of Life Study. Harpreet Chhina , Research Coordinator of the Study, has informed me that they have now reached their target sample size and are unable to accept any more participants. The response was so overwhelming that she is unable to respond individually to all who emailed. Dr. Alvarez has been selected to present an Eposter of the study “The Quality of Life of Patients with Hereditary Exostoses : A Cross Sectional Study of Adult and Pediatric Populations” at the 2010 POSNA (Pediatric Orthopaedic Society of North America) Annual Meeting in May, and the results of the study will be posted on our website when available later this year.
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.
BUMPY BONE CLUB MEMBERSHIP KITS
Over 260 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.
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!
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 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.
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.