Community Discussion Forum Parent support Blond Hair…..Blue Eyes

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    Avatar of Nicole

    When I'm reading about PKU it often mentions that those affected have blonde hair and blue eyes…..or experience a lightening of hair and eye color.  Are most people with PKU born with blonde hair and blue eyes or do they change with high levels of PHE?

    Avatar of Katie

    PKU is very common in people who have blonde hair and blue eyes.  Of course, there are people who have PKU that do not have blonde hair, blue eyes… And I have heard that the higher your PHE levels, your hair can become lighter.. but some people can just have natural blonde hair … I had much lighter hair a few years ago when I wasn't great with taking my formula.. recently, I have had several people commenting on how dark my hair has gotten… it could be since I'm getting older, but it is very possible that it is because I am consistent with drinking my formula… hope this helps :)

    Avatar of Hafsa

    i heard the same thing……that the higher your phe level the lighter a person's hair is…….when i was on diet i could just tell if my diet was going well if my hair was dark or light…..obviously it's not that much of a dramatic change….

    everyone in my family has black hair and dark brown eyes, i however have light brown hair (now that im off-diet so i have higher phe levels i guess my hair is constantly light brown now) and my eyes are probably the lightest brown from my siblings……..don't know whether the theory is true, but i'm not complaining! :)

    Avatar of Jennifer

     Yeah I agree with the others. My son Ian has light brown hair and light blue eyes. Now I do have blue eyes, but dark brown hair and my husband (his dad) is Asian so we thought for sure he would have dark hair (before we knew about the PKU)

    Avatar of

    I was born with black hair and my eyes have always been dark brown. As I've gotten older, my hair has lightened to kind of a caramel brown but I don't know whether or not it has anything to do with phe levels… I wasn't getting in all my formula most of last year, but my hair kept its pattern of being darker in the winter and its lightest (some of it blond) in the summer… from sun exposure? Go figure.
    Actually, I don't believe I've met more than two people who have blond hair and blue eyes out of about the twentyish PKU folks I know.


    my son is 6mths born with white hair and blue eyes…..still has really white hair and blue eyes and his levels have been under control since birth

    Avatar of Becky

    Hi, I have PKU an as u can see I have brown eyes, and light brown hair, it was blonde when I was younger, but has gotten darker as I have got older. I do not think that this has anything to do with levels or PKU. Although, I thought it was ginger hair and blue eyes. All the PKU conferences etc I have been to I have been the only person with brown eyes and brown hair! around 5out of the 7 in the group were ginger haired and the others were blonde. I personally think there is just as much chance of having any colour hair whether PKU or not!

    Avatar of Jennifer

     Here I found this on

    Phenylalanine plays a role in the body's production of melanin, the pigment responsible for skin and hair color. Therefore, infants with the condition often have lighter skin, hair, and eyes than brothers or sisters without the disease.

    Avatar of Craig
    Phenylalanine is convertedto tyrosine bytheenzyme phenylalanine hydroxylase (PAH, the one absent in Classic PKU) in the liver, tryrosine is a precurser for the production of melanine which darkens hair, skin and eyes. The low levels of tyrosine, apparent because of this disfunction, are responsible for the fairer features of PKU patients. If you are off-diet, tyrosine levels will increase as it is a naturally occuring amino acid in protein foods just as phenylalanine is, so to assume being off diet will make you fairer is questionable.
    Avatar of lynsey

    hi every1

         im lily n im 23 years old n i have classic pku i realy struggle wiv my pku diet alot n iv tryed so many tems to strt bak on it again but im findin it vry diffecult , iv been off the diet 4 15 yrs now n i have noticest little things thats changed in me so i feel i desperatly need help because i have vry vry high blood levels my hair n eyes have changed colour my hair was a mousey brown n my eyeswere a greeny brown n now my hair is blondy to a dirty blonde n my eyes are bluey green no brown i am quite frightened about things iv noticest n im just wounderin if en1 elst has felt the same

    plz message me bak id love to hear ur comments n ideas on wot mite help n i cud tryn i will get bak in touch wiv u .

    thank u

Viewing 10 posts - 1 through 10 (of 10 total)
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