My family will be attending the 2008 NFED family conference in Iowa next week. I have attended family conferences in the past. But, this year is different. First of all, I have always attended as an affected individual. This year, I am attending as a parent of an affected child. That really changes the perspective. Also, it is my husband’s first opportunity to attend a family conference. As well as my son’s.
Family conferences are a lot of fun. It is a chance to see old friends, and meet new ones. All of whom share the knowledge of what it is like to be affected by one of the Ectodermal Dysplasia syndromes.
Our schedule is full. We have workshops that we want to attend, so that we can learn more about what to expect for our son, Mister. And there are Grand Rounds. Not everyone participates in Grand Rounds, not everyone is comfortable with it or could make it a day early. I, however, LOVE Grand Rounds. I love the opportunity of helping medical professionals learn about the disorder and putting a face to the long words in their text books. For Grand Rounds, the doctors (and residents) all come around and have the opportunity to ask us questions about how we are affected, etc. Typically, a host of disciplines are represented–from dermatology to urology, dentistry to ophthalmology, and just about everything in between.
We also get the opportunity to meet with one of the physicians that we met in Houston in 2006, at Baylor University. We participated in genetic research and the results are in. I am especially interested in the results, because I am the first known case of Ectodermal Dysplasia in my family.
Be blessed,
Virginia
