Monday, March 31, 2008

CDH Awareness Day

I'm not generally a cheerleader for individual medical causes....I'm not sure why a disease becomes more important the second a celebrity (or any individual) happens to be diagnosed. I'd obviously prefer that we have enough federal funding for all research so that disease advocacy groups don't need to fight over limited donation dollars. I don't want to get political, but I happen to know of half a trillion dollars that have recently been spent on a debacle in the Middle East....perhaps that could have cured a few diseases instead....but I digress.

Here's where I go against everything I just said and become a cheerleader for an individual medical cause that has affected me....I'll try to keep the rah-rah to a minimum. From a "cure" perspective, there's definitely a difference between Andrew's condition and many of the other fatal and semi-fatal diseases that are out there. Though there are certainly research dollars that need to be spent investigating the best way to deal with symptoms....pulmonary hypertension, lung hypoplasia, digestive malformations, ventilator dependence....the most important part doesn't have to cost that much money. With a disease like CDH (Congenital Diaphragmatic Hernia), the critical step is awareness. One in 2500 is more than you would think, and there are some very specific ultrasound measurements that can detect it as early as 18 weeks.....yet up to 50% of children aren't diagnosed in utero.

Today, March 31, has been designated Congenital Diaphragmatic Hernia Awareness Day. CDH parents have written to governors and other politicians all over the country, and this commemoration has been made official in 22 states, five cities, and at least one foreign country (Mexico). I'm not going to ask for donations or tell everyone to wear a turquoise ribbon....just consider yourselves aware. I know Andrew had an impact on a lot of lives, and hopefully we've educated our small corner of the universe. You can bet that our pregnant friends are going to be asking their ultrasound technicians to look for a strong diaphragm and healthy lungs.

This is probably not following the CDH Awareness Day script, but here's how I'd like you to "celebrate" today:
  1. Think of cute little Andrew an extra time today.
  2. The next time someone tells you they're pregnant, tell them to get a very thorough sonogram that will be reviewed by an entirely-engaged radiologist.
  3. Think about ways we can better prioritize our federal budget, so that none of these diseases slip through the cracks.
  4. Vote with the candidate (or party) that will bring federal dollars back to medical and technological research.

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