I just want to start out my journey of blogging with a topic that is very dear to my heart: Phenylketonuria. As I have mentioned in my first post, my 13 year old brother has PKU. I feel that it is important for as many people as possible to know and understand PKU, as anybody could be a carrier of the gene and not know it until their child is born with PKU. My family has never heard of the disease until my brother was born and sent us through a blind journey.
Phenylketonuria is an autosomal recessive genetic defect that affects in 1 in 10,000-20,000 in the United States. If untreated, PKU can lead to brain damage. There is no "cure" for PKU...it is a lifelong disease and is treated with powdered formula mix and dietary restrictions.
Max drinks his formula through a sippy cup/water bottle because, to be very frank, the formula STINKS. But it's where he gets his protein from. My brother has the most severe type of PKU that is called Classic Phenylketonuria. He can not have meat or a lot of dairy products. He has to watch his Phe levels in all that he eats. If he has too much Phe in his system, he will have the biggest mood swings and attitude I have ever seen.
I can NOT stress enough how important it is to control levels of Phe beginning at an early age.
That is as far as I'm going to go for tonight. It's getting late for me and I have work in the morning! I hope everyone has a good night and hope I have sparked enough interest in learning more about PKU.
Thanks for your time!
<3
Here is a picture of my baby brother and I!
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