I wanted to ask for your support/action to help individuals in the US who have PKU, like my four-year-old nephew Paul. I felt this was important enough to get the word out to as many people as I could.
Phenylketonuria (PKU) is a genetic disorder that is characterized by an inability of the body to utilize the essential amino acid, phenylalanine. Amino acids are the building blocks for body proteins. ‘Essential’ amino acids can only be obtained from the food we eat as our body does not normally produce them. In ‘classic PKU’, the enzyme that breaks down phenylalanine, is completely or nearly completely deficient. Chronically high levels of phenylalanine and some of its breakdown products can cause significant brain problems. Want to know more about PKU? Check out this great video…
Although it is rare, most states now require testing for PKU (what a blessing for families like ours!) and it can be managed by sticking to a lifelong diet allowing those with this genetic disorder to live a rather normal life.
Here’s where you come in…there’s an online petition being signed that urges state representatives to support the Medical Foods Equity Act as part of the current Health Care Reform Bill. Please take two minutes to sign the online petition (really, it doesn’t take any longer than that). By signing the petition, a letter will automatically be sent to your representative in D.C. asking for their support of the Medical Foods Equity Act. It’s so simple but can make a big difference! Our family, and others like ours, thank you for your support!
If you feel so inclined, please feel free to forward this information along to others who may be willing to support this. Facebook it. Tweet it. Blog about it! 🙂
Want to know more about PKU? Google it. It’s rare, but there’s plenty of good information out there. 🙂
Have questions about PKU? Feel free to ask. We’ve learned as much as we can, and we’re thankful for modern medicine that has given my nephew as normal of a life as possible. We hope the same for others.