MHE & Me - A Support Group for Kids with Multiple Hereditary Exostoses and their Families

A little history:  Way back in 1999 two moms, one living in New York and one in Michigan, began searching the internet, looking for another family who had a child with osteochondromatosis or multiple exostoses, the names given to the rare disorder their eldest children had been diagnosed with... Now this was in the early days of the internet, and there was not much information available, no support, no one to answer their many questions or calm their many fears.  So, when Susan and Cassie found each other, thanks to an internet support group in the United Kingdom, they became friends...their own little support group.  Then they found a great website - BandAides & Blackboards, which gave voice to kids living with all kinds of rare diseases - physical and mental, and their siblings.  The kids - not the parents -  wrote about their experiences, told their stories, and were given advice about dealing with common challenges, like having operations, or dealing with anxiety, or losing a sibling...  They suddenly realized that as much as they, the mothers needed support, it was necessary for their kids to have a voice and support systems of their owns. Their children wrote their stories for the BandAides & Blackboards site (they're still up there) and even inspired the creator of that site to write a poem about what she imagined living with bumpy bones was like.  The experience made their children so happy that Susan and Cassie decided to start their own little online support group, put up a little website, and offered it as a place for kids to tell their stories.  Soon they started hearing not only from kids and teens, but also from adults who had grown up with MHE and had many unresolved issues.   MHE and Me - and the section for sharing stories -  the Bumpy Bone Club, were born. 

 

In 2000, MHE and Me became one of the founding member organizations of the MHE Coalition.  Throughout the years we have developed resources to help families learn about how MHE affects different aspects of their children's lives.  Those resources can be found by clicking on the MHE and Me dropdown menu.  We will continue to add more resources, as well as a library of links to cover a variety of subjects.  Please let us know of any helpful websites, products, etc.  You can join us on Facebook (MHE and Me) if you'd like to be part of an active online group.

 

This website is in its beginning stages, as we are totally reconstructing it, hopefully for the better.  Keep checking back to see what's new!

 

Susan

 

 

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