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great talk Charlie. so pleased to hear your life got easier after kuvan

How do I share my story ? Everything this women has said , every way she has suffered is exactly myself or worse . This is the truest video I have ever seen about PKU. I have been an advocate for other chronic illnesses I have like Crohn’s disease and a stoma bag but I want to bring more awareness to PKU for it has ruined my life and is honestly getting worse . 😢

I'm on palinzq. 100% regulated blood levels eating whatever I want. I'm 42 now, and I've been on it for 6 years. Blood levels in the 20s. 200 grams of protein a day. I went through all this, too. Get on the medication ASAP. Also, I'm an agnostic now.

Hi Charlie, I was put on the PKU diet way way back in 1964. The diet was in its very early days back then. Although I lived in West Yorkshire my mum and dad had to get all the special foods like bread and milk substitute direct from the children's Hospital in Liverpool. there was no such thing as exchanges, everything had to be measured and weighed.The milk substitute was called Prosperol Emulsion and it tasted absolutely horrible. I had to have a protein supplement called Aminogran which was equally foul tasting. You sound to be doing excellently well on Kuvan, I hope you continue to thrive on it. All the best for the future Charlie.

I'm from Indiana I have classic pku. I been struggling with pku for a long time I am 44 years old

I'm from Indiana I have classic pku. I been struggling with pku for a long time I am 44 years old

Hi my name is brie

I have asked for her to be referred to a pediatrician But there is a wittenlist of three years to be seen by a Pediatrician my little girl is two

My little girl has PKU. She has classic PKU and I have got concerns about her. I keep telling her specialists that she is flapping and tiptoe. And she can't stay focus on anything. They are going to do a trial of kuvan on her, but it does not work for classic p k u

I am pku and work in the emergency dept as a senior hca and we have to work 1 mth of nights and 1 mth of days, long hrs. I am not on diet but I am starting to realise my condition is effected and I sometimes feel really ill on the night shifts. I can relate so much to what Louise has said as working mum and I too struggled throughout both my pregnancies with hyperemisis gravaderim and had post natal depression with both pregnancies. I feel like right now I don't know where to go for support because I have lost touch with the system and I am so unmotivated to do things when I am not in work. It's really hard.

Louise, I've just come across this and I want to say thank you. I felt everything you just said as a lot of it applies to me too. I'm so worried about my future, I've been off diet for the longest time and it scares me to think what might happen. I've been saying this to people for years and I feel like it's brushed under the rug and it's a really big thing for me. Thank you so much for your video and your words, it was like I was listening to you verbalising my thoughts

Thank you PKU here appreciate you.

I feel very fortunate reading these comments and listening to these stories. I have Classic PKU, went off diet at age 6 and have not looked back. I have literally No effects from an unrestricted diet. I tried to go back on 2 different occasions ....once when I was in middle school and another in 2012. I am 46 now and feel great while off diet completely. Only reason I went back on those 2 times, but failed, was because it is what I was told to do.....I should be on diet. My Phe levels are mid 20's off diet and on a the modified diet.....around 12 or so. I felt no difference. I consider my life a success, I have a great family, 2 daughters, great career of 25 years, business owner, and fun loving attitude with lots of friends. I attribute this success to my Mother and Father who took meticulous care of me while being on diet until 6. I am a believer that the early care, and the strictness of the diet in those first 6 years is critical in the development of your ability to withstand the high Phe blood levels in adulthood.

Goofy ahh Alex leayroyd

I can't believe I have pku and don't understand a single term

I just want to know how I can safely build Muscle 😂 Any pku body builders have any tips for me 😂

Im pku From spain Kisses!

I was on minophen and cymogran I can relate to this me and my sister have pku the cymogran we used tepid water and sugar

You remind me of a younger Tim McMullan, quite dashing.

Hi, my daughter is 34 and her dietitian has her on 12 exchanges I think but her levels are nearly always over 400 usually around 700. What should her levels be between. When she was young her levels were always over 700 and I followed the dietitians recommendations always. Are her levels too high. Also can she claim the PIP benefit even though she works full time? TIA

Hi guys my son called Ely has cpku he's only on 3.5g a day are you guys classical and will his exchanges increase much throughout life? Thanks

If you live with PKU or want to know how to cope with it, or support someone with it, or help in raising a child (eg your grandchild, niece, nephew or friend's child), then this is INVALUABLE

Thanks Chris for a wonderful trip down memory lane and for all you have done for thos with PKU especially in those early pioneering years. Best Wishes Anne Green

Love hearing about the history of PKU. Thanks Christine and Suzanne. Louise x

Christine has many photographs of her patients dating throughout the 1960s, 70s and 80s and we would have love to have shown them, although as the internet had not been established we felt we could not. These families were real pioneers and they fully supported Christine's teaching on PKU which she did in the UK and US.

Must have a try at all these experiments now!

I am loving this. Can't wait to make an explosion in my back yard ! Thank you Professor Protein! What a wonderful set of activities there are here. Woohoo!

Totally agree. I think when I was younger the diet stood out more as being "different", but these days there are so many people on different diets (like veganism for example) it's becoming normalised. People are like, you're on a diet ? ok whatever....

I have pku as well

I have pku I’m from catalonia

High responder's digestive tract on diet liberalization: ua-cam.com/video/1mTCxpGSIbI/v-deo.html

I have PKU To

update please, how are you?

That's amazing! So happy for you! How is your response to Kuvan compared with other PKU patients? I just want to get a sense of how well this might work out for my child.

You are a very impressive young man and your family will be very proud of you! As a PKUer myself I know your troubles with the school stuff I have classical PKU. It is not as severe as yours. I was on 7 exchanges a day. I have been able to increase my exchanges somehow now that I am older. The world feels like a much better place when you can have more exchanges! All the best for the future, it looks bright.

Dear Professor Anne Green, Thank you very much for this outstanding lecture! Best regards, Júlio C. Rocha

Thank you Anne, so interesting to hear the story again, especially with new information from the family. Well done.

Thanks for this It was really good to know about the PKU history

I have classical PKU and it is very hard to manage I'm one of the old pioneers I was taken off diet 1972 by doctors I'm disabled now I have learning disabilities now and they put me back on diet in the mid-1990s it's been very hard for me when I'm sick I get neurological symptoms not so pleasant I'm on a seizure medication I take an antidepressant I do get good levels I have classical PK you and it is very hard to manage i keep going somedays are good others are bad i live alone and i am on housing assistance i am 53 years old all i can say is keep doing your diet treatment

What a star! I hope you tinue to enjoy life -- and food!

What do you mean your levels were low? Isn’t your PHE supposed to be low for pku?

Thanks mate i have pku and I hate myself for it

She is my dietitian good job Anita I have pku and she has helped m e with it for 12 years now and I have anxiety because of pku

Seeing this video has made me feel I am not alone, I am 47 and was removed from diet at 8years old and didn’t go back on until I had my first child. I am currently still trying to juggle my family life and children etc and keeping on diet have had a lot of the same problems as Louise and some severe symptoms that are still a struggle even now I am trying to keep my phe levels where that need to be. I haven’t worked for many years as anxiety and trying to cope with 4 children and everyday life too difficult😕

As the parent of a PKU child we are constantly told that things will be OK when our kids grow up.....thanks for your honest and obviously painful assessment.....It will not! Its tragic that the powers that be will let us wall into Queen's Square London think that your experience is acceptable/bearable......We need to coordinate our refusal to accept that the coping with a condition that means you can't eat food normally is to not eat food normally! Kuvan exists use it!.....Thank you so much for your BRAVE testimony......I'm sorry that you have to be so exceptional/inspirational just to be normal!

Hey, I might be going on kuvan but my pku isn't as servear as this boy's, I'm on 9 exchanges or 9 grams of protein each day but as I've started college my blood levels or phe levels are becoming high on a regular with my dietitian not being overjoyed about it, kuvan might be good for me as sometimes I struggle with eating patterns and currently have dropped out of college early.

I'm so happy that you're doing so much better! That's great! I'm just barely starting to learn about PKU so I'm sorry for not knowing what exactly you mean by saying "exchanges", would you, or someone, be able to help me understand? I see it has something to do with food, almost like a point system? Thanks for any info that can be provided :)

KUVAN is so expensive, my son is BH4 responsive PKU, he could eat normal food by taking KUVAN. BUT we can not afford it. Why not to low it price and let more children benefit it? it is so sad!

Its good to see that im not the only one who has suffered so much with PKU. We need more videos like this to help eachother. Because at the end of the day we are the experts with this.

Louise's experiences mirror mine almost exactly x