Monday, October 08, 2007
Private Practice
Apparently there's a show on Wednesday nights on ABC called Private Practice (never seen it) which recently aired an episode featuring PMD (Pelizaeus-Merzbacher Disease, a genetic and hereditary disease which my son has and which I carry). While it's pretty cool that this VERY RARE disease would be selected for primetime national TV, it would have been nice if the writers got their facts straight.
From what I hear, the show cast a plump infant GIRL to be the PMD child, and said the average life expectancy is "5 yrs, with medication."
PMD, as a disease, affects BOYS. It is an X-linked disease; that's just the way it works. Girls can have PMD symptoms, but there's usually something else going on. Drs don't quite have that part figured out yet.
PMD boys are usually small and "sleepy." And there is no way the average life expectancy is 5 years. Joshua, my son, is 5, is one of the younger ones in our international support group, and currently receives NO medications. And from the looks of things, he's not going anywhere any time soon. And, he has the most severe form of PMD.
As people affected by PMD, we're definitely interested in raising awareness of the disease, and you can't get much better than primetime TV. However, giving people false information is not the way to accomplish this. We need doctors and nurses to suspect PMD so it can be diagnosed and treated, moms and dads with new PMD babies -- unsure of what they're facing -- to have TRUE information to turn to, etc. The facts on PMD aren't all rosy, but at least they're realistic, which is better than giving false expectations to families and medical practitioners. (Most Drs and nurses have never heard of PMD, either.)
If you saw the episode, or even if you didn't (like me), you can post a comment on ABC's website thanking them for giving PMD airtime (cool!) but requesting that the writers do their homework before showcasing a disease: http://abc.go.com/site/contactus.html
From what I hear, the show cast a plump infant GIRL to be the PMD child, and said the average life expectancy is "5 yrs, with medication."
PMD, as a disease, affects BOYS. It is an X-linked disease; that's just the way it works. Girls can have PMD symptoms, but there's usually something else going on. Drs don't quite have that part figured out yet.
PMD boys are usually small and "sleepy." And there is no way the average life expectancy is 5 years. Joshua, my son, is 5, is one of the younger ones in our international support group, and currently receives NO medications. And from the looks of things, he's not going anywhere any time soon. And, he has the most severe form of PMD.
As people affected by PMD, we're definitely interested in raising awareness of the disease, and you can't get much better than primetime TV. However, giving people false information is not the way to accomplish this. We need doctors and nurses to suspect PMD so it can be diagnosed and treated, moms and dads with new PMD babies -- unsure of what they're facing -- to have TRUE information to turn to, etc. The facts on PMD aren't all rosy, but at least they're realistic, which is better than giving false expectations to families and medical practitioners. (Most Drs and nurses have never heard of PMD, either.)
If you saw the episode, or even if you didn't (like me), you can post a comment on ABC's website thanking them for giving PMD airtime (cool!) but requesting that the writers do their homework before showcasing a disease: http://abc.go.com/site/contactus.html
# posted by David and Aleecia @ 4:20 PM 
