Saturday, December 2, 2006

Online Resources

As someone used to being able to easily find information on obscure issues online, I was surprised how difficult it was to find an authoritative resource on congenital hand differences. We also struggled to find a community of families facing similar conditions. The initial problem was terminology. There are so many variations of conditions and even medical professionals, especially those unfamiliar with the topic, referred to her condition with descriptions like "lobster claw". They not only sound unfortunate but sent us off on a couple wild goose chases when we first started researching the topic.

Eventually we came to learn that the accepted description of our daughter's condition is called a Limb Difference. Entering that into Google (use the plural "limb differences") immediately brought us to The site is maintained by parents of children with limb differences. Its most valuable tool is the Connections section that functions as a discussion board. The ability to search past discussions is very useful. In fact my wife and I didn't even end up needing to post a question. By reading past discussions we got leads on treatment centers and hospitals and recommendations and reviews on the leading specialists in the country.

The discussion boards led us to the Curtis National Hand Center at Union Memorial Hospital in Baltimore. This appealed to us because I frequently travel to DC on business and my wife and I were familiar with Baltimore having lived in the DC/Maryland/Virginia area for 6 years.

The website also hosts discussions with physicians Brian Harley and Jeffrey Wint who volunteer their time answering questions from discussion participants.

It's hard to overstate what an important resource this site turned out to be for us. The parents and physicians who take the time and initiative to maintain this site and patiently answer questions from the nervous parents and relatives of these kids are doing families like ours a tremendous service.

No comments: