My name is Meaghan Rogers and I am a 28 year old with PKU. I am running the Long Island Half Marathon (my first ever!) on May 7, 2017 to raise funds for PKU Helping Hands, Inc. PKU Helping Hands, Inc's mission is to provide those with PKU, related conditions and their families with support, to actively engage in interaction and collaboration with state and national organizations, and to serve as a source of education to the community. They are an amazing organization and I am honored that they agreed to let me do this!
Phenylketonuria, or PKU, is an inherited genetic disorder that prevents the body from breaking down protein. This causes in a dangerous buildup that, if not treated immediately upon birth, causes (among others):
- Permanent mental retardation
- Psychiatric and behavioral disorders
- Neurological problems such as seizures
All babies in the US are tested with a heel prick blood test at birth, and for the 1 in 15,000 that have PKU, they must follow a strict diet low in protein. If they ever go off-diet they risk all of the same consequences. Now, when I say low in protein let me give you some examples.
There are various forms of PKU, and I was born with the most severe type- Classical PKU- and was able to eat 5 grams of protein growing up. Here are some examples of what that looks like:
- 2 individual Pop-Tarts OR
- 2.5 Sam Adams Boston Lagers OR
- 5 bananas OR
- 25 Saltine crackers
"Wait! Don't you need protein to live?!" Why yes, yes you do. So we with PKU take medical supplements to help us keep healthy. I take 60 pills called Phlexy-10 tablets that give me the protein equivalency I miss from my diet. Yes... you read that right....60. Every day.
And they do not come cheap at $1500 a month. There are also medical foods we must eat to make sure we get enough calories. A single 5 serving bag of pasta is $13.99.
Health insurance helps, but in 16 states they are allowed to outright deny coverage
and even in states with protecting laws we often have to fight for months to not pay out of pocket. It took me 4 months last year to get coverage for my medicine- eventually we won but 4 months is a long time
That brings me to PKU Helping Hands, Inc. This 501(c)(3) was started by the Burniche family, a family affected by PKU who ralized just how many people were put in the position of deciding if they could afford living a healthy
life with PKU or just living
. Located in Albany, NY they help families afford medication, food, emergency supplies, anything they need to stay healthy. They are an amazing organization and I am proud to fundraise for them to continue to help struggling families.
There is no cure for PKU, but we can help make sure that those of us born with this disorder live full, happy, healthy,
For more information, please visit:
My training blog!: https://run4pkublog.wordpress.com/
PKU Helping Hands, Inc.: http://www.pkuhelpinghands.org/home.aspx
PKU Helping Hands, Inc. Facebook: https://www.facebook.com/PKUHELPINGHANDS
National PKU Alliance: www.npkua.org
Mayo Clinic on Phenylketonuria: http://www.mayoclinic.org/diseases-conditions/phenylketonuria/basics/definition/con-20026275