Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, ...
Landyn has been blessed to have Medicaid as his medical costs over they years would have been impossible for our family to pay. When ...
Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only ...
Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical ...
These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...
My name is Breanna and I am 23 years old. Luckily, I am still on my parents insurance and plan on staying on it until I can no longer. ...
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 ...
Employer plan claims that metabolic formula is considered food supplement / baby formula and is excluded from plan.
Not only helps us but all other families who need to provide safe calories for our children. Employer plan claims that metabolic ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
Our Emily was diagnosed at 9 days old with Phenylketonuria (PKU). During the last seven years of her life we have had insurance ...
Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very ...
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
MSUD powder is expensive - $2,775.00 for about 2 1/2 months of powder and is the mainstay of the diet for an MSUD person. Insurance always denies payment for other protein supplements such as valine and isoleucine which are recommended by the doctor.
We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...
Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York.
His story starts like that of most ...
By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.
My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later ...
I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down ...
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 ...
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 ...
We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters ...
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 ...
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku ...
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 ...
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 ...
Though I’m on an employer plan, we contribute another $9000 a year to cover premiums for our 5 member family. That plan has a $6000 ...
At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of ...