Phenylketonuria (PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.
I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down ...
Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to ...
Elliot was diagnosed with PKU at 6 days old. He is a happy, energetic and loving 2 year old. We are fortunate enough to have formula ...
Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...
Our 10 year old daughter Marisa has Phenylketonuria (PKU). She is only able to have 5 grams of protein a day from regular foods. She ...
Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end)
Where it all began: I located a new ...
My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is ...
My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...
I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All ...
Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...
When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe ...
Because of my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently ...
My daughter is a vibrant 1.5 year old. She currently requires about 9 cans of formula a month, which will only increase as she gets ...
Our oldest daughter Stephanie was born with PKU. The costs for her food and supplies is very costly! We as parents do what we can do ...
When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...
We are a poor family. Aside from food stamps we don’t have anything else to help with regular food let alone medical food. over ...
Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...
My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...
Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...
My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living ...
My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself.
The cost of food and formula limits many things besides medical foods themselves.
Because of the high cost of formula and food, ...
Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity ...
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...
I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical ...
We are lucky that my husband works for Google and has some of best health Insurance you can get but most are not so lucky. We had to ...