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.
Having coverage for medical nutrition would mean the world to our family. Instead of feeling like I have to creatively figure out how ...
Having coverage for medical nutrition would mean everything to our daughters. They have had to take jobs because of the insurance ...
My son Alex was born with PKU. He is currently 9 months old and requires 6 ounces of his PKU formula. As he grows this is most likely ...
I am a voting 46 year old PKU adult male who is self reliant and is a major source of income in my house hold. I have a career, build/ ...
My daughter’s formula is currently covered. This formula allows my daughter’s brain and body to remain healthy. It allows her to ...
Having coverage for medical nutrition through TRICARE has meant everything to me and my family. 2 of my brothers and I were ...
My daughter, Brittany, was born with PKU and we were able to provide her with the nutritional products that she needed to avoid significant brain development problems. Unfortunately, that is not the case for all children and adults in the US.
The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...
Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. ...
There are a lot of difficulties that come with having a metabolic disorder. Our society revolves around food, and daily ...
If we had coverage for Josephine’s medical nutrition it would be such a blessing to not only Josephine but to our family. ...
Not having to worry about paying for medical nutrition would be a huge relief to our family. NO family should have to pay for these ...
Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for ...
I’m Elizabeth and I have Classic PKU. When I was five my drs and parents a took me off the diet and formula. I was fine till age ...
This is Eliot and he has PKU. With formula, low-protein foods and an incredible amount of discipline on his part, Eliot is a happy, ...
My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i ...
At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of ...
My name is Kendall Temple Jr. and was born in 1966. I was one of every first people diagnosed with PKU in the state of Maryland. There ...
Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in ...
Yazmin was four days old when she was diagnosed with mild PKU. She’s been allowed most things except for meat, she still requires ...
We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the ...
My daughter was born with PKU and our world was flipped upside down to say the least. I fought with our insurance company for months, ...
Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we ...
Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what ...
I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, ...