|MHE and Me...
to some interesting sites.
Please e-mail us at firstname.lastname@example.org with suggestions for other sites we might link to...
|The MHE Coalition http://www.geocities.com/mhecoalition
This group was formed in February of 2000 by members of MHE and Me, The MHE Onelist Support Group, and The MHE Family Support Group in order to promote and encourage research, provide needed services and support to individuals and families living with MHE, create a Research web site to benefit patients and physicians, create a national physician directory, and to reach out to MHE-affected individuals and families throughout the world.
For further information, please contact
Chele Zelina, President, at CheleZ1@aol.com
Susan Wynn, Secretary and Newsletter Editor, at email@example.com
|MHE Onelist Support Group http://www.insidetheweb.com/mbs.cgi/mb328550
This international support group offers the ability to communicate with others affected by MHE via e-mail. The group is very interactive, and topics range from sharing information on the effects of MHE and how different people cope with them, to offering support during times of crisis. The group offers a weekly "chat" for members. The MHE Onelist, founded by Bill Daniels in July of 1999, has grown to 80 families in seven months, and continues to grow.
http://www.onelist.com ~ Type M_H_E in search field.
For further information, please contact CheleZ1@aol.com
|MHE Family Support Group http://www.radix.net/~hogue/mhe.htm
This group is the original MHE support group. Its informative web site is for many their first link to others with MHE. The site has been expanded to provide information about other MHE-related web-sites.
This site gives you easy access to the different support groups available, as well as to several sites giving medical information on MHE..
MHE On-Line Club
This is a new on-line support group and chat room.
|Hereditary Multiple Exostoses Support Group
This United Kingdom-.based support group has a very informative web site, as well as hosting a noticeboard for members of the international MHE community.
|Band-Aides & Blackboards
When Chronic Illness...or Some Other Medical Problem...
Goes to School http://funrsc.fairfield.edu/~jfleitas/contents.html
This is a wonderful site - one that will interest both you and your children. Take some time and read the stories of children who have varying medical problems and a tremendous amount of courage and wisdom. Our "Stories" page has links to the stories of two kids with MHE, Conor and Nicole, and Bobby has a page there as well! There are also pages which discuss many of the problems facing our children: teasing, whether or not to tell people what's wrong with them, why kids get sick, etc.
A very special thank you to Joan Fleitas for her invaluable help and guidance in the creation of the MHE and Me website.
The Shriners Organization has 19 hospitals throughout the United States and Mexico which provide orthopaedic care and rehabilitation services, free of charge, to children up to 18 years of age. Many members of our organization were treated at Shriners facilities as children, and many members take their children there now. For further information about Shriners, please see their extensive website, which provides information on the hospitals, and the services provided.
|In an effort to improve the quality of life for children with MHE, we welcome ideas from our members on various techniques of management and care, general and educational suggestions that individuals have investigated and/or found beneficial. This exchange of ideas is welcome. Parents and others have the opportunity to decide if they want to follow through with the suggestions.
We do not, however, as an organization,support or endorse any particular treatment, therapy, medication, or product. We encourage parents to support each other with suggestions and to contact their child's physician for final approval, where applicable.
Many children who have difficulty writing find the Alphasmart a wonderful tool to help them take notes, write essays and reports, etc.
This company makes the Thera-Med Hot Pack, which is a gel pack that is microwaved. Perfect for hands, knees, ankles, shoulders, plus the gel feels good against bumps!
|AquaShield Reusable Cast Cover http://www.tot-par.com/aqua.html
This waterproof cast cover was child-tested and received "rave reviews" for making bathing, swimming, and other water "sports" possible. It is available in adult and child sizes.
|Comfort Bath http://www.comfortbath.com
These rinse-free, disposable wash cloths, with Aloe and Vitamin E, can be heated in the microwave. They come in very handy during those days following surgery...