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?

I know what it is. I used to read medical dictionaries and we learned about it in Biology class too. I'm not surprised that many don't though because it is rare.

It was discovered in 1934 by Ivan Asbjørn Følling in 1934, not 1969 though further information on PKU and the importance of diet was discovered later.

Although I certainly couldn’t have given you a detailed answer, I knew of this. I think I knew of it before I had a child, but I don't understand how anyone could go through the heel prick test and not be interested enough to ask! Fair enough if it was years ago and they’d then forgotten I suppose.

You say a midwife didn’t know? That shocks me. It’s done at 5 days, when you’re still under midwife care.

DD had the heel prick test last year but I really only remember CF as one of the things it was testing for. I suppose like most people I didn't really think much about it as I assumed she wouldn't have any of them so didn't feel the need to look into it any further. I admit it didn't really occupy much headspace in those early weeks.

This sounds awful OP and the fact there's a drug that could solve your problems that you can't access is bloody ridiculous.

I know what it is (I worked in paediatrics). I haven’t voted because I think you are unreasonable to expect everyone to know about what is a fairly rare disease, but absolutely reasonable to expect that any clinicians involved in your continuing care should be well aware of what it is so you shouldn’t have to go over the same ground over and over again, life is hard enough with a chronic condition.
I’m also disgusted that a drug which could transform your life is not available to you. I can think of other things which it would be better for the NHS to economise on than that.

I think some people may have misinterpreted my op. I am not expecting everybody to know what it is. Obviously, there’s a million and one conditions that I wouldn’t have the first clue about. My post is that more people should be aware of it than currently are. My frustration is not with random people on the street not knowing. It is with doctors and pharmacists, of which I have to justify prescriptions with, it is with people who know you and know your condition and don’t do anything to understand it. It is with teachers looking after children who have it and not properly researching the condition etc.

I know what it is because a friend of mine from school has it.

I’ve heard of it. My friend’s son has it and I remember learning about it in science at school (90s)

I have a new baby and don't know what it is. I dont recall anything that was being tested for being explained in any detail for the heel prick test tbh and I wasnt given a leaflet to my recollection- I have kept all paperwork so would have it if so

I have three children all had the heel prick test and I’ve never heard of it at all, I’m very shocked about that. Gosh it sounds so difficult for you, I can’t believe you have to pay for your prescriptions and now having to fight for them! That is just so very unfair.

Never heard of it but I don't work in the health industry and I don't have children so I've never known of the heel test. I'm even more none the wiser when referring to it as an acronym as it doesn't give any context. You can't know what you don't know.

Just wondering op if you know what else the heel prick test, tests for? I was not expecting my son to be on daily medication for life after receiving his results either. Fortunately his diet is not restricted.

I agree that anyone in the healthcare/medical profession should be aware of the complexities PKU. It must be so frustrating as most people think you are being difficult/awkward.
Sending 💐 🌸.
But I would not expect teachers, colleagues or friends to understand unless I explained it to them.

Armadilloboss I think most people don't 'get' any condition that affects one's diet and/or the foods one eats. It's not that they don't know what that condition is or what it means, that's not the important part. It's that they don't understand and/or accept that it limits our choices, in your case much more drastically than mine.

I have Coeliac and it simply amazes me the disregard some people have for a person's dietary requirements. Not that I expect them to cater to me, not at all! Just that they don't seem to be able to understand why we can't have 'just a little' or even worse, they think we're being dramatic or even lying about it for attention.

I think it's unconscionable for a health professional to not take it seriously enough to do some research when someone tells them about a diagnosed health condition. I'm sorry you're having to deal with this.

I knew about phenylketonuria though I didn't know (but guessed) it was also known as PKU. I remember it from the heel prick tests when my DC had them. I'm not a medical person at all.

I remember getting a test for toxoplasmosis when I was pregnant as I was worried about some undercooked meat I'd eaten. The midwife had never heard of it which amazed me, as it's the main reason you're not supposed to handle cat litter when pg.

Just wanted to send out some love to you OP. No wonder you feel frustrated and bloody fed up at times. That sounds like a very difficult condition to live with day in and day out. Your GP should be more empathic and more helpful.

And I just wanted to echo my disgust at parliament refusing to pay for the drug you need to come off this diet. You must feel totally forgotten about and disregarded.

I wish you'd put the full name in the op. Sometimes we have heard of something but dont know acronyms

OP - I replied already but I’m realising what you mean by your post now (my son has CH, also tested for on the heel prick test) YES it is bloody strange that so many health professionals do not know more than a googled sentence on these conditions, as was our experience.

It makes it extra rough.

Only last week a pharmacist questioned why my son was taking levothyroxine; I said he’s got CH. She said something along the lines of ‘oh by days! How long will he take that stuff for?’

I know what it is and I have received info about it as I am an interpreter and I work with NHS ( although I have never met anyone who has got PKU so far). Of course, I did get the brochure about "the rare illlnesses" when my kids had the heel prick test but a lot of people don't read much of it if they don't need to, are just happy to know their babies are fine.

I know what it is because I researched what the heel prick test was for when I had my first baby.

I know what it is as it runs in my family. My cousins child has it. Most of our extended family had to have it explained to them so they wouldn't accidentally feed the baby the wrong thing. Many of our family are medical professionals and I was surprised they didn't already know.

I know what it is but ONLY because I knew a lady who got pregnant on her first outing out the gate at 16 and had twins who both have it.. Without her I would not have known about PKU.

I know what it is. I'm a nurse. When you say 'I have PKU' and they don't understand, do you then say 'phenylketonuria'? Could it be that they aren't picking up what you're saying, perhaps they mishear it as TKU or just mishear it in general. There have been times patients have said things to me and then when they've gone on to explain, I know exactly what it is, I've just misheard what they've said initially.