When a family gets the diagnosis of spinal muscular atrophy, it can be a devastating moment. Sometimes parents are not aware of what to ask or where to find information.
We have had several patients newly diagnosed in our intensive care recently and I became aware of how little we all know about how to help these families cope. In my research I found three websites which I feel might be helpful to families in this new and stressful situation.
The National Institute of Neurological Disorders is a place to start to find initial medical information from a medical perspective. The website can be found at http://www.ninds.nih.gov This site gives information not only on SMA but on other neurological diseases and their research.
Families of Spinal Muscular Atrophy has a non-profit organization and a website that gives tons of information and ideas for parents from a parent perspective. It has not only medical information, but information on coping, education of your child, dealing with loss, and new clinical trials and treatments. It can be reached by going to http://curesma.org
Another organization with alot of information and support is FightSMA/Andrew's Buddies
It can be reached by going to http://www.fightsma.org
Check these websites for support information, research, and to read about how other families cope under similar conditions.