To wonder why more people don’t know about this

[Armadilloboss]

I have PKU. I was diagnosed when I was born. My elder sister also has it. I’m now 32, and whenever I have had to mention it to anybody, not one person has known what it is. This includes teachers, doctors, pharmacists and midwives.
Given that PKU is one of the main conditions tested for during the heel prick when a baby is born, aibu to think more people should know what it is? Do people not ask what the test is for?

yanbu especially as it's mentioned on each packet of chewing gum.

I know what it is. Am a doctor

I know it but I work in healthcare

I had to google it.

@Bigbopboo that’s very reassuring. Iv moves twice in the past 5 years and both times I have had to have my dietician write to my doctor as they have refused my food prescriptions.

Hands up. I had to Google.

It's on the GCSE and A level Biology past papers OP.

I remember the heel prick. I knew what it was for at the time, but I haven't retained this information because it's not relevant to me.
What is it?

Not a clue and I thought I was quite clued up on medical stuff. Sorry, will know now!

Why is it on chewing gum?

I barely knew my own name at the time of the heel prick with DS1. I was knackered and post CS.
I know what PKU is but if the baby doesn’t have it then why do people need to ask?

While it’s tested for, it’s very rare, and most people have never come across somebody who actually has it - the prevalence is only about 1 in 10,000. I’m a GP, and I don’t think I’ve ever had a patient who had the condition.

I have heard of it - remember learning about it in biology at secondary school (90s) and I have a freaky memory for random things.

Sorry, I missed that you said you’ve met doctors who don’t know what it is - that is surprising.

surely any parent knows what it is.. as when babies are New born we sign or decline for it to be tested for and get a leaflet explaining ?

Hmm. I have a rare condition I was told I have to flag up to medical professionals esp in certain circumstances. I am yet to meet one who's had a clue what it is or why I'm telling them.

Googling this because I didn't know what PKU is, I hadn't heard of the other rare inherited metabolic disorders on the list for newborn blood spot testing. Although I'm not a HCP.

Expecting people to be familiar with every rare disease or disorder going is probably too much to expect.

The test you mention is for rare conditions. I expect most people hope for the best and are lucky rather than trying to learn about 9 rare conditions they don't need to deal with.

I know what it is, but mostly because my friend at school had two half sisters with PKU who my mum taught when they were in their first 3 years of school

I work as admin for clinical psychology and I know about it. some of our psychologists do the cognitive testing on the paediatric patients at certain ages.

I know what it is! Worked with a lady who's grandson had it. This is over 30 years ago but it's stuck me as I'm diabetic and my diet is no way as restrictive

It's very rare.

It might have been more helpful to explain, rather than expecting them to Google.

DDIJ...what has being unemployed got to do with it?
Why would I know about it from consuming fizzy drinks?

I've heard of it, it was in a school text book & I have a strange memory for stuff like this. It requires a special diet right?

I know about it because as you say that is what the heel prick test is for.

I guess I just find it frustrating when I am having to fight for prescriptions because a doctor doesn’t agree that I need prescription food. I miss out on a lot of social activities because people think I am being awkward when I can’t go certain places. Iv been called an ‘awkward vegetarian’ before. It can be very difficult when nobody understands why you can’t do things.