Viewing 15 posts - 1 through 15 (of 68 total)
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  • #4342
    Avatar of David

    I would like to see place where us 20 somethings and up can talk about issues related to having PKU as adults.
    It seems there is alot of focus on children and teens with PKU but not who lot that focuses on the adult population with PKU.
    Just a suggestion

    Avatar of

    I would like to propose the same. I think there should be a separate section for adults where we can talk about our experiences managing PKU and living an active life.

    Avatar of Matthew

    I totally agree since they would not have all the information that they do for the kids if we weren’t the ones who help in the studies to make it easier to cope and live with pku

    Avatar of antoinette

    there is alot focus on teen pku and not adults I do aggree on that.

    Avatar of antoinette

    is there anybody out there who has went off the pku diet and now is struggling to get back on or has went back on.if there is please email me. at I want to talk to someone who undrstands what I am going through. thank you and god bless toni lujan

    Avatar of Debbie

    I am a 30 year old woman who has until recently been off the PKU diet for at least 15 years. I went to my Doc because my husband and I would like to start a family. To do this I needed to get back on the PKU diet. For the past two weeks I have sailed through it with flying colors, but I have been motivated. The milk has changed tremendously. I was so excited that I was able to eat cereal again. I tried regular milk one time and one time only. It was nasty watered down yuck! I think going back on the diet has been easier for me than some because I do want to start a family. I received my first levels yesterday, and they were 30.80. WOW right! My second levels were taken yesterday and I can’t wait to get those.
    Have faith in yourself and GOD. He is there with you.


    I’ve come off my diet but I have resumed my maximum Aid today due to all the vitamins I could gain. I don’t fancy going back on my diet as I used to have to hide my scales under the table to weigh my food. I feel as healthy as ever though. My blood levels (the BIG blood test from the arm, not my finger) confirmed that I was still healthy. My diet USED to be strict when I was younger. If my levels were high my mum got a bollocking from the dietician.

    Avatar of Dianne

    I too have been looking for information on adult PKU, treatment (non-diet), progression of the disease into later adulthood, etc.
    I care for two sisters in a group home who have been diagnosed with PKU, both are now in their 50’s and one sister is having some medical issues. We as staff are trying to find information to assist us in their care.
    If anyone can point me in the right direction to a website or support in the Ontario, Canada area it would be greatly appreciated.

    Avatar of Jodi

    Hey Dianne,
    I too work in a group home, but I have PKU, and find it very hard to stay on diet while working.
    I was just wondering if you could post whatever you find out with regards to aging and having PKU, because I would be interested in the info, as other I’m sure would be.
    THanks so much!
    Jodi Pickering n32, CPKU
    Nova Scotia, Canada

    Avatar of sara

    hi, please help me with getting info about the latest news on pku and what to expect, is there hope they can find cure to pku?

    Avatar of Orla

    hi all
    I have pku and I must say that I never found it a problem. I think it was because my parents were so good with me when I was young. I live in Ireland and I find the support for pku here is excellent. I would like to here how other people find living with it. nO.N.

    Avatar of Marta

    HI! new to the forum but I was off diet from age 8 till 29 when I decided to have my first child. After she was born I went off diet for 9 months and back on so I could have my second and final child. After that, I said the heck with the diet…lots of headaches later I thought, hey I would try the diet to see if it helps. I have a lot less headaches and more energy but struggle with wanting –mental and physical- cravings for ice cream and cheese -not so much meat. nanyone understand?????

    Avatar of Natalie

    Hi guys, I am a 27 year old female who has just gone back on the PKU diet because my husband and I want to start a family. It would be lovely to speak to people, all across the globe, in the same position as me. nThe question that I am asking myself is why do us females have to go back on the diet and the males do not (my brother had PKU and he has now got 2 healthly girls and he didn’t need to go on his diet!) nWaiting in anticipation

    Avatar of craig

    I would just like to say it is great to here from so msny people of a similar age as me who have gone through the same thing. I am 27 and have had PKU all my life, I came off my diet at 16 and have never felt better.

    Avatar of craig

    Nattie the reason you need to go back on your diet is because you have 4 abnormal genes and your partner will either be a carrier or will not be. However the chance of passing PKU still remains and as you will be the one carrying the child, remember everything you eat will directly effect your baby. So if your baby has PKU when born, your levels will be a lot lower thus so will be your baby’s levels.
    If you ate a normal high protein diet, I would suggest that your baby will need intense levels control at birth.
    I am not a medic professional but I have had it explained and males do not have to go back on purely because eveything they eat is not effecting the baby. nHope this helps and can I suggest you and your partner speak to your G.P as they can test your partners genes to see if he is a carrier of PKU. If he is not then I believe your child will only ever be a carrier. If he is a carrier he will have 2 abnormal genes and two normal genes, thus if he gives two abnormal genes then you will have a pku baby, if he gives two normal genes you will only have a baby who is a carrier. Remember you have 4 abnormal genes so what ever happens the two genes you give will be abnormal. To be PKU you need 4 abnormal genes.
    I am not a medical professional this is just what a doctor has told me. I am 27 male who has PKU and my girlfriend is having her genes tested for the same thing. I just want to know the chances of passing it on, I think the doctor told me it is 100/1 chance of it been passed. Not sure if it higher for females with PKU though.

Viewing 15 posts - 1 through 15 (of 68 total)
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