DIASTROPHIC HELP

The purpose of this web site is to help the parents of children with diastrophic dysplasia (DDs for short) solve the very early questions of self-care and adjustments to the home and school environments. Diastrophic hands and the overall more limited range of motion pose special self-care challenges. These children learn to do everything well, but the early days can be confusing for parents, with each family trying to "reinvent the wheel". We hope to avoid some of that with the resources on this web site. We have attempted to put the hints in categories as much as possible, but there will be some overlap.

The ideas here are NOT the last word, just a starting point. Although DD children are alike in many ways, they are also very different in their abilities at various ages. Size, limb proportion, and range of motion make it impossible to have just one formula that works for everyone. It is our hope that some of the hints listed here will work perfectly the first time and, barring that, that the child will figure out his/her own ways of improving on and adapting these hints.

We have assumed the premise of using as few special gadgets as possible, and where gadgets are inevitable, an attempt has been made to have them be cheap, easily-made, and/or readily accessible for a lifetime. Some of the gadgets are shown here, while others can be found in medical supply catalogs.

For even more resource info, talk to other parents of DDs, as well as adult DDs - most importantly, follow the cues from your children. Our thanks to the many people (young and old) who contributed the information contained herein.  Very special thanks to Cathy Holland, Jenny Clark, and Mary Carten for their unflagging encouragement and support.

Last Updated by Vita Gagne, 01/03/2016