Imagine your newborn not thriving? Imagine how helpless and frightened you’d feel if your child’s heart and muscles were weak. Devastating.
Listen up people, there’s important information you need to know about infantile-onset Pompe disease (IOPD)!
I recently read abstracts about two studies (this one and this one) that were published in the Journal of Pediatrics. Basically, both studies show significant and dramatic results when Pompe is diagnosed and treated early, because people/babies have a better chance of responding well to treatment. These articles are rather a pain to read. For me, it was like watching paint dry, but the findings are important. So here goes…
I’m curious if the United States has made Pompe testing mandatory for newborns? Correct me if I’m wrong, but I don’t think it’s been passed into law yet; although, I know parents can request it since this is an inherited disease. There HAS been an FDA-approved treatment on the market since 2006, so one would think that maybe the pendulum is swinging in the right direction?
Food for thought!
