I was diagnosed with PKU late, at thirty days. I have some issues, mainly short term memory, due to my late diagnosis. I graduated ...
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...
Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a ...
Our beautiful baby boy Aidan was born last July and shortly thereafter diagnosed with PKU. Once we learned he could grow and develop ...
Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the ...
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 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 ...
We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...
I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have ...
I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical ...
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...
Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity ...
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, ...
When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...
I am a full time lawyer working 60-70 hour weeks with two little children at home (3 yo and 12 months). I travel for work and often ...
What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer ...
Diego is a happy and thriving 9-year-old boy from Chicago, IL with a history of intestinal atresia. This means that part of his ...
We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...
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 ...
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 ...
Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...
So far Mark's medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never ...
The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.
Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...
Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs .
Insurance info: Our ...
These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...