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?

@ElizabethMountbatten can’t do vegan as Quorn and soya, nuts and seeds and dried fruit are not allowed. Vegetables such as potatoes, broccoli, cauliflower and sprouts are also restricted to a point. Bread, pulses and grains are not allowed so no pasta or rice. No beans or lentils etc

I learnt about it as part of my degree but I've always found the food labelling odd, surely there's so much more that's a source? Or is it when you wouldn't expect to find protein like in a soft drink?

If my memory serves right does it change at puberty? And become less restrictive, I might be thinking of something else though so would love to learn more about it

I remember visiting a psychiatric hospital 35 years ago part of my Psyc degree, and seeing someone who had PKU. That made me especially aware when a few years later I was asked to consent to the heel prick test. So frustrating for you OP when even some of your GPs are not familiar with this.

I know what it is, am a carrier of both PKU & CF due to coming from a 'closed' community (Irish Catholic) but do not have PKU and have not passed it to my children as DH isn't Irish or Catholic. I have had cousins with both, the PKU ones are still with us.

I know what it is, but only because I've morbidly curious and had to look up why there were phenylalanine warning messages on everything. I don't have any frame of reference (bar having read your post up thread, OP) of how it affects someone's life though. I'm really surprised to hear medical professionals are uninformed though, that's horrible.

To wonder why more people don’t know about this

Why wouldn't you explain what it is in your OP? PKU is just an abbreviaion, had to google it.

It must be frustrating for you but you do realise how many different illnesses, long term conditions, injuries and other health related issues there are out there?? It very self absorbed to expect every single person you come across to have knowledge of your particular thing.
I have Pressure urticaria, most people have no idea what it is, without googling do you know exactly what it is, what causes it and what things I avoid??
My friends daughter has a rare disorder that only affects about 15 people in the uk and she has to have weekly hormone injections else she will die. There’s no need for pretty much most of the population to know anything about it
if it’s not something that affects a lot of people or is obvious in its presentation then people don’t need to know on a day to day level. I expect if you went back to those doctors and other people you have told them they probably know a lot more as have probably read up on it.

I wasn't aware of that but I am now. The only thing I remember what one of the tests were for was sickle sell anaemia.

Brie - dermographism and cholinergic urticaria here

I've never heard of it, done Higher Biology 20 years ago and it was never mentioned. It sounds very hard.

I know I could google, but I’m risking looking silly. I was a nurse on the distant past and I think pku is a congenital metabolic disorder called phenyl ketonurea, possibly the wrong spelling.
I

Phenylketonuria, one of many names I was taught/read about about, whilst studying for my NNEB.
That was 30+ yrs ago. Strange the things you remember.

I know what it is. My daughter has a rare metabolic disorder (one of the urea cycle disorders) and when telling people about her we often compare it to pku as it's more well known, though often they have no idea about that either.

I'm sorry you're having trouble with prescription foods, we have the same issue. The bloody GP is prone to removing all my dd's foods from her repeats at regular intervals. I have to get her dietician to write every time we want something added as the GP tends to just argue its necessity. I don't think people (including a lot of medical professionals) can often get their heads round "a low protein diet" meaning really really low protein and how many foods that excludes or severely limits. It's easy to understand not eating milk or eggs. Sweetcorn or pasta is more of a stretch.

I know what it is but only because 1 I studied childcare 0-5 at gcse and because my dds friends (twins) have it. It should be more widely known about though.
Same as my mum has a rare lung condition with a very misleading name and Dr's constantly try to give her medicines ss that could kill her, because the name makes it sound like something else.

OP, it sounds like such a difficult condition to manage. I can understand your frustration.

This is familiar to me. Heel prick test.
The world is full of unusual conditions. Can't learn about all of them.

I have nursed someone who had pku, Hevwas born before it was tested for . Yes I would think people would know .

I only know about it from nurse training in the US and doing the heel prick tests on the babies.
I did years later meet one lady who had a small baby with PKU, Her older child didn't have it.
I wondered how they were doing years later. Friends and I would meet up (her included) and rotate houses for coffee. She taught us a lot about it, I remember her weighing the baby before and after feeds and everything being very regimented for them to control everything.
Last I heard he had some learning difficulties, he'd be 22 years old now.

@greenlobster I’m sorry your having the same issues. It can be so frustrating having to go back and forth between dieticians and doctors.
The most frustrating thing for pku is that there is a drug available that would remove the need for the diet and allow people to live normally. It is available in the us and Europe and even turkey but the government in the UK won’t find it here

I know a little bit about it, i work with children.
Was a shock to me how dangerous it is when I first read about it

My daughter is taking her GCSEs in May (AQA exam board).

PKU is not part of the Biology syllabus as far as I am aware.

In terms of genetically inherited conditions, there is reference to polydactyly (having extra fingers or toes) and cystic fibrosis but not PKU.

I know what it is, but I always thought it was something you grew out of.

“there is a drug available that would remove the need for the diet and allow people to live normally. It is available in the us and Europe and even turkey but the government in the UK won’t find it here”

What? Crikey! 6000 people is a lot of people to be affected.

I have heard of it from school, didn't know they tested for it on the heel prick test. It must be really hard for you OP, and having to fight for prescriptions is ridiculous. I understand that not all medical professionals will have an in depth knowledge of every condition, but you would expect them to access information if one of their patients has it, surely? Rather than just not fulfil the scripts

I know what it is - I’m a pharmacist