Patients & Providers for Medical Nutrition Equity

Lyndsee, Age 13

My daughter, Lyndsee, was diagnosed in January 2016 with a rare disease, eosinophilic esophagitis. Therefore, she has to live on a prescription formula, Neocate Splash. This is what keeps her alive. She currently has no other safe foods. Her formula

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 campaign for awareness that NORD started, The 7000 Mile Rare Movement. I

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 not the easiest thing to do. There are so many foods

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 stay-at-home mom because I’m worried someone will feed her the wrong things. We are scared

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 throughout my pregnancy I was able to receive medical food coverage from my

It would end the never ending anxiety of worrying about whether I can feed my son who has Eosinophilic esophagitis. My insurance will only cover his formula if he doesn’t eat any food. Otherwise, they say it is not medically

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living for our family, and yet every month we are faced with the enormous cost of medical foods not

When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe it. He was being denied insurance coverage for the only treatment that would prevent intellectual disability and allow

Because of my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently hold a master’s degree in Human Nutrition and work in Central Alabama as a registered dietitian at a group of

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 older. I have no idea how we’ll be able to afford her formula if we

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 for our children. My husband works long hours and has very few days off

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 year old who does her best to understand this disorder, but her diagnosis has

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 half of our money goes towards expensive foods in stores and trying to get as much

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves fruits and veggies but relies on medical nutrition to provide him filling, rounded meals and snacks. It

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 within range 2-4 so it is just a waiting game now. I have to struggle

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so many. Our son Maximus 9 y/o noticed a taste difference in his formula & refused to drink

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 in the United States. We have medical insurance. I have spent hours on the phone with insurance about PKU medical

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the diet while trying to afford rent, utilities, tuition, health insurance, other medication, car insurance and other bills.

New York Teen, 17

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.

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity organization) based on our family size and joint income. Any medical food that we order are out of

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, learning to care for someone with PKU has been challenging. My husband works out of town,

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they are producing enough milk or getting enough formula, we were in the NICU

I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical formula, but nothing towards all the low protein foods that are required. Medical formula is covered by state of

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 request a GAP exception to get the foods covered which requires clinics

The Smiths

pkunews

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my children will one day be forced into a situation similar to that they were

Lyndsee, Age 13

Angelica

Emily, Age 18

Jalen, Age 5

Andrea

A. Jay

Owen

Joe

Millie

Harper, 18 months

Stephanie, 12

Emalynn

Terry, 4

Asher, 4

Renee

Maximus, 9

Breeze, 6

Danae

New York Teen, 17

Lisa

Anthony, 1

Ellie

Piper, 2

Cooper, 10 months

The Smiths