Let me tell you about my family and PKU
I have been married to my sweetheart for 8 years and together for 10. He is the love of my life he also has a condition called PKU, his brother also has PKU. My children do not have PKU but they are carriers, which means one day I could have grandchildren with PKU..
PKU is an inherited, genetic condtion in which the body cant process phenylalanine (Phe) an amino acid found in many, many foods. If people with PKU follow a normal diet, they would eat more Phe then their bodies can handle. Too much Phe is a toxic to the brain. High Phe levels over an extended period of time can lead to vomiting, irritability,eczema,seizures,psychological and behavioral issues,and sever mental retardation.
Phenylalanine (Phe) is found in all protein containing food (meat,eggs,dairy,nuts) and many other foods that are not gennerally thought of as containg protein (most wheat products,pasta,and bread,and some fruit such as oranges and cherries.) People with PKU have a very strict diet they have to follow .
In 2000 a national institute of Health experts decited that lifelong care is required for the treatment of PKU. Treatment which includes Phe-resticted diet, have regulare check ups with your Dr, have regular blood testing to see where their Phe levels are and a PHe-free formula that they drink on a daily basis.
My husband needs at least a can A DAY of Phenyl-free formula to keep is Phe levels were it needs to be,the cost of one can of Phe-free formula is $27.93. To provide him with enough formula for a year is $10,194.45.
In June 2009 the Idaho department of Health and Welfare cut the funding for the adult PKU program which stoped my husbans and my brother-in- laws formul from coming. Insurence companyies may help some familes with the co-pay, which is only about half of it, but they are not required to, and you have to have insurence for at least a minimume of one year for them to even look at helping with a co-pay . For familys with a job that dont offer insurence that is a lot of money to try to come up with. In the state of Idaho there are about 16 adult PKU patients who are going through the same thing my family is going through.
Families that have a child with PKU will one day have to figure out how to help that child get their formula when they become an adult with PKU if something dont change. If the states can not find the funding to help these adults then Insurence companies should be offered and made mandatory to pay for the Phe-free formula which they half to have.
There needs to be more research, more programs, more education in raising awareness on what PKU is some people think its just a diet that they choose to be on which is not the case.
There needs to be a National support group, and programs to assist families. Every PKU case is diffrent some more severe then others. Its time that they have a voice and they be heard. they need help, finacial help, medical help, mental suport to one another. There is a tone of people in the world trying to get help and trying to reach out to each other to form a PKU network that will get the attion of the goverment and our congress men but without each others help, what are we to do?
Together we stand.
