PKU Awareness celebrates and honors those affected by Phenylketonuria (PKU). PKU is rare, genetic metabolic disorder that affects approximately 13,000 people in the United States and one of those happens to be my son. Since the introduction of newborn screening in the 1960s, 1 in 15,000 infants are detected to be born with PKU. People with PKU can’t process an essential amino acid called phenylalanine, or Phe, which is found in most foods that contain protein, including nuts, whole grains, meat, dairy and some vegetables and fruit. If PKU is not properly managed soon after diagnosis, Phe levels can rise and become toxic to the brain, they will become totally brain dead.
There is no cure for PKU, but the disease can be managed by strict control of blood Phe levels through a low-Phe diet and, for some people with PKU, daily medicine. It’s important for PKU patients to adhere to their treatment plan, as high Phe levels can severely impact cognition, mood, social functioning, and concentration and IQ levels.
The more people who know about PKU and how to treat it, the better. Building PKU awareness can help drive research for additional treatment options and lifestyle impact. You too can help by spreading the word about PKU. This disease is so rare that anytime some hears about PKU they are not very educated. My son follows a very strict diet and keeps a daily meal journal to count his protein intake. Please help us spread the word about PKU. Its important that PKU families have the support needed to buy the expensive formula that is a requirement for a healthy child and the dietary special foods.
Months ago our state under went some budget cuts that left families of PKU no choice but to raise noise about the issue. At that time I started a Facebook page found here: http://www.facebook.com/#!/pages/North-Carolina-PKU/125029734200393?v=wall
And also got the local news involved. We have changed some of the items in the NC budget cut but still looking to do more! Help us with donating to our cause! We started small on our goal but as soon as that's reached we will be going higher!!
DONATE TO NC PKU: http://bit.ly/fCgPu2