Are you shy or honest to say to people that I'm a PKU?

Xiaofei

Hi All,

Are you shy or honest to say to people that I'm a PKU? My son is PKU and only our close relatives know that he is a PKU.

Is anyone in college? How do you cook for yourself? What's your Phe value for an adult?

Thanks for sharing~

Gregor Hammerschmidt

#1 Xiaofei sure, I am telling everybody—nothing to be ashamed of. You live a perfectly healthy life with your diet. With recent changes and more people actively choosing a diet (Vegetarian. Vegan, etc.), it's become even less of a topic.

I went through high school and university and have been working in IT for 15 years now. PHE values should remain low even in adulthood. There are guidelines where you can read more about: https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01391-y.

Xiaofei

#2 Gregor Hammerschmidt Thanks for sharing, Gregor.(Not sure if this is your first name🙂)

My son is 9 years old, a PKU. I'm still a little worried about his college life although it's still far away, haha.

Gregor Hammerschmidt

#3 Xiaofei yeah it is my first name 🙂
You should definitely join a PKU meeting in your vicinity. Seeing - talking an experiencing PKU adults will give you great confidence. I am sure with an open mind and positive attitude towards PKU there are absolutely no limits.

Xiaofei

#4 Gregor Hammerschmidt yes, that's correct.

Thanks for your encouragement🙂

Do you take extra Calcium and vitamin every day? Which brand are you eating? Thanks for sharing🙂

Gregor Hammerschmidt

#5 Xiaofei I am on the Mevalia forumla. I do not take extra vitamins or calcium. The formula covers what you don't take up through normal (healthy) food. Also, at least in Austria, I do a regular complete checkup once a year to check for vitamin levels, and everything is fine. This has also been the case on previous formulas I have been taking.

Xiaofei

#6 Gregor Hammerschmidt

I tried some calcium to my son, but it's to hard for me to chew, even destroyed his one tooth, haha!

KateGilmore

I used to tell everyone around me about PKU, also at my job which I still have (since 2013). But, to be honest, I would rather not tell at the job anymore. Also I am a bit more hesitant about telling the people around me, unless they are close to me. It's easier than it was a few years ago to find something to eat elsewhere, because of vegetarian and vegan diet trending and I really enjoy this fact! It's not so special anymore if you only order a vegetarian meal or a soup at a restaurant. Plus there are many more options which are PKU friendly. ☺️

Xiaofei

#7 KateGilmore

Yes, only our close family know he is a PKU, his friends do not know that and they do not understand, it's too complicated to explain to them.

He is not strictly vegetarian, he eat very less meat which he likes, certainly within limits, but mostly natural protein comes from egg.