National PKU Awareness Day

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Jordache

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I would just about bet my life that the ast majority of you have never hear of PKU before. Those of you who recognize it are probably biology students at some level and ran across the term in your textbook, or mothers who paid attention when they heel pricked your babies.
I am one in a million because Jesus says so, but one in about 20,000 according to live birth statistics. I challenge you to learn one new thing about PKU today. PKU is a silenced population of people who struggle daily with health and health related issues. Why? 1). It's a newly discovered and treated condition. The oldest living PKU patients who have been properly treated as per the current studies are only in their late 40's. 2). We are few an thus out voice is not loud enough to be heard at a governmental level. 3). Treatment varies greatly (and dangerously) around the world. Ue to lack of information, there really is no completely standard way to treat PKU. Thus, many of us end up advising each other via FB. 4). Much of the information out there is completely outdated. Med Schools, doctors who are just keeping up on the "latest", teachers, and others often are sharing and treating patients with dangerously outdated information.
PKU is a life-long disease with many symptoms that are not fully recognized everywhere. We are a community of people looking for answers and support, but we will never get it until we're heard.
I challenge you to look up one fact about PKU that you never knew. Avoid Wikipedia as the information is completely incorrect. Take a look at some PKU blogs. Check out YouTube videos on PKU.
Ask me questions. Many people with PKU have it much worse off than I do. God gave me the intelligence to understand PKU much better than most people with PKU have the ability to do. I thank God that I am not retarded since if I were born two years earlier, I would have been. Instead he's given me the brains to understand and teach about PKU
 
ty for educating me about this subject. I read that this was caused by a lack of the enzyme. can u just buy the enzyme, like u buy other enzymes?
Do you believe it's hereditary, like the web says? Good luck hon. u are brave. God bless.
 
You are correct tht it is caused by a lacking enzyme called phenylalanine hydroxylase. It's not an enzyme you can purchase. It's an enzyme which can only be produced by a healthy liver.
It is definitely hereditary. It's a recessive genetic disorder. I have a younger brother with it also.
 
I see that you are very well educated about your illness. That is always the best approach, & not one that most people take. Most people rely soley on their doctor, who tells us whatever they learned in school. It's not really the dr.'s fault, since they really don't have the time to study & update themselves on every medicall issue they treat. Do they have specilaists in PKU?
It took me years to learn, thru others' mishaps, that whatever is wrong with anyone, they need to see a specialist in that condition.Is this something that is always presented in childhood, or can it begin to show symptoms later in life? (undiagnosed earlier?).
I am very much into alternative health, combined also with AMA doctors. Have you also researched PKU in alternative health? There are some conditions where alternative health is silent/knows nothing about.
 
Thanks for sharing.
What dietary restrictions and actions are involved for you, what other lifestyle adaptations?

From WebMD:
Phenylketonuria (PKU)-Topic Overview <-- link


NEWBORN SCREENING <-- link
url


url
 
As a child I was told I could come off treatment at about 6 yrs old. That's how newly treated this is. I am 28 now so it's really only been about 20 yrs that they've correctly treated it. At 6 they told me, "Nope, diet for life!" That's a big slap in the face to a little girl. As an infant I wa the first breasted PKU baby ever. I am in the New Englan Journal of medicine. So at first my mom had to weigh me, feed me, weigh me again, and then supplement with special formula. I also took weekly blood tests and weekly dr visits for about a year. Problem was, the closest dr was 90 miles away.
As a child I'm pretty sure I learned to spell Phenylketonuria beote I could spell my own name. I was on a very strict diet of no meat, dairy, soy, nuts, wheat, flour, and legumes. I also was allowed limited amounts of fruits and more limited amounts of vegetables. I ate specially made products like pasta made from starch, cookies that were hard enough for teething babies to suck on ALL day, and a quart of formula (amino acid supplement) that smelled like vomit and ate away at the enamel on my teeth. We did monthly blood tests which I took over early. I began with comply personal dietary control when I was about 8. I visited the dr every 6 months for a complete physical.
As a teenager I started to learn more about PKU. I joined a community of people on the web and discovered many other issues I had not been aware of. By the time I went to college, I was more or less off diet. Shortly after I began having seizures and tremors, anxiety issues, concentration issues, etc. I went to a dr who laughed at me ad refused to treat me. Over several yrs I've been with 3 different clinics, unable to get my treatment, and suffering.
Explanation of your diagram: a person with PKU does not have (at all or enough) the enzyme phenyalanine hydroxylase. Every person needs the amino acid phenylalanine (phe) which is not synthesized by the body. In an average person that phe is neurotoxic, but is converted into tyrosine by the enzyme phenylalanine hydroxylase. The tyrosine, as well as other neurotransmitters created from other amino acids are transported to the brain and help in the production of serotonin and dopamine. A person with PKU doesn't create tyrosine from phe. Therefore, the phe in its raw for is transported to the brain poisoning it. With the converted amino acids, no dopamine or serotonin is created, and because of the build up of phe, no other enzymes are transported to the brain.
Example of diet:
Say an PKU person is allowed 10g of protein per day. The average person is supposed to have 60g or so.
1 slice of bread is 3g.
One orange is .3g
A 4oz serving of chicken is 50g
One 8oz cup of milk is 40g
 
Thanks again for sharing. Are you still "off diet"? From the short reading I did, it sounds like the dietary aspects are critical. I hope that you get proper nutrition and supplements.

I do not eat meat, fish or dairy products (except by what might be trace amounts that might be hidden in processed foods) mostly for ethical, social and environmental reasons. The Seventh Day Adventists (SDA) have done research into this area at Loma Linda University. Several articles in a quick search reveal the simplified results of studies, I don't know if more recent research and publications exist from them. There are specific studies relating to Amino Acids in the Vegetarian / Vegan Diet (I am not SDA, but know a bit about the SDA and know people who are).

Tell us more about what you want us to know and share with others. What does your research reveal, and lead to? What if any do you think are the social factors pertaining to prevalance in certain countries over others (for example centuries of sustained dietary habits/restrictions etc.) I am sure your outreach will do you and others good in managing and perhaps avoiding PKU.
 
Well, I've been trying to get back on diet for many years, but with the stress of life and issues with provision for my treatment, I'm still technically off diet.
Im currently going on disability in order to get back on diet, but its still very hard.
It's important for people to know that PKU exists. So many PKU people have to inform their drs about PKU. We still have to correct drs incorrect information. It's very difficult to not be able to be have people to understand you. Everyone has a basic level understanding of diabetes. Often I explain PKU in regards I diabetes. Diabetics must control sugar. PKU people must control protein. According to the government, PKU is lumped into a group of rare inherited metabolic disorders. This is because these diseases are so rare that lumping them is meant to make them more visible. However, statistically speaking there are still only a few thousand people with PKU in the US. Obamacare actually reverses all provision for inherited metabolic disorders. We are a very small community and our voice is not heard.
 
I can see that technically even a vegan diet is not adequate for PKU, so you have to be even more selective - that is hard. I took a look at a few sample diets and information from medical sites and dietician sites to confirm that. Do you take Tyrosine as a supplement or would you if you go back on a restrictive diet?

I like the idea of relating PKU conceptually to diabetes to help others understand. Amino acids and Proteins are even more basic to good nutrition and health than that even. I am glad that you are helping make others aware of the condition as it will help ease your mind, maybe help in your own personal management process and in the larger sense help others to avoid or manage and have society relate to the issue. Thank you for sharing the information and all best wishes and prayers for your good health and your efforts to enlighten.
 
Thank you for this information Jordache. I am watching videos on YouTube about it. You are right, you are SOOOO blessed that you were diagnosed on time! :) I pray that you find a doctor who can give you the right treatment.
 
The formula that is part of the diet contains tyrosine. It also contains all the other essential amino acids excluding Phenylalanine which the body does not synthesize.
Interesting though, my estranged younger brother texted me at 5 am this morning. It seems he's trying to get back on diet because he's finally recognizing how the adverse effects are affecting his relationship to his girlfriend and her little boy.
He really never took interest in PKU when we were growing up, so now it's sort of like training a baby. He has been completely out of the loop since around 2000. He's in for a big surprise.

Usually when talking to average people, I say I'm kind of a super vegan. Im vegan minus everything that a vegan would use to supplement for missing proteins. This means no beans, legumes, tofu, or other soy products, etc. That usually gets the point across.
 
Organic coconut flour replaces all other flour with a different ratio to liqiud. So you have to buy a cookbook. Grain/flour problem solved for me, I can make about any dessert with it. I hear that peeled zuchinni, put into a pasta maker, makes fantastic pasta.
 
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