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NSPKU
United Kingdom
Приєднався 3 сер 2017
The NSPKU is the National Society for Phenylketonuria (PKU). We support people with PKU and their families. The NSPKU has launched a Call for Action; a 6 point agenda for specific improvements in the care available for people with PKU. Find out more at www.nspku.org
Відео
What does the NSPKU (National Society for Phenylketonuria) do?
Переглядів 2878 місяців тому
This is a collection of testimonials from the PKU (phenylketonuria) community in the UK about the work of its National Society, and how the NSPKU helps.
In 2023 NSPKU, National Society for Phenylketonuria is 50. Check out PKU advocacy past and present!
Переглядів 12410 місяців тому
PKU (phenylketonuria) was first described in 1934 and first treated in 1951. In 1973 the NSPKU (National Society for Phenylketonuria) was formed and now celebrates its 50th Anniversary - here we show a timeline of PKU and NSPKU progress. Please share this film far and wide with all your family, friends, workmates, schools and more, to raise awareness of PKU and the NSPKU.
Snacks 2022 low protein snacks and treats
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This is a 73 page photobook shown as a video/slide show. The photobook is kindly made and shared by Anita MacDonald and the metabolic dietitians at the Birmingham Children's Hospital. Thank you for this great resource.
Christmas 2022 Low protein treats and more!
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This is an 82 page photobook shown as a video/slide show. The photobook is kindly made and shared by Anita MacDonald and the metabolic dietitians at the Birmingham Children's Hospital. Thank you for this great resource.
PKU Protein Substitutes with Suzanne Ford, Metabolic Dietitian (UK)
Переглядів 2642 роки тому
Explaining exactly what are protein substitutes, why they are vital in the PKU diet, how to take them and more. You can replay and re-watch this as many times as you want
PKU food labels and working out exchanges with Louise Robertson, Metabolic Dietitian (UK)
Переглядів 4582 роки тому
Everything you need to know about reading food labels and working out exchanges if you have PKU. Replay and re-watch all or part of this as many times as you want.
Tribute to John Noble-Nesbitt
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Join us in understanding and appreciating the effect John Noble-Nesbitt had towards how PKU is today
Susan Waisbren - Psychologist - Questions from her Postbag
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Come hear Susan answer questions from the PKU community
Christine Clothier reminisces about the PKU Diet in the 1960s
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Join Christine with a trip down memory lane to the PKU diet in the 1960s
Mad Scientist - Professor Protein and his Amino Amigos!
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Come join Professor Protein and his amino amigos for some fun and games!
Louise Lamaris - International PKU Day Workout 2021
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Join Louise and helpers in a fun filled exercise session on International PKU Day 2021 Comment below your thoughts!
Cary Harding - International PKU Day 2020 Presentation
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Cary Harding - International PKU Day 2020 Presentation
Sheila Jones - Unlocking the Diet for PKU - Anne Green Presentation
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Sheila Jones - Unlocking the Diet for PKU - Anne Green Presentation
Sheila Jones - Unlocking the Treatment for PKU - Anne Green Podcast
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Sheila Jones - Unlocking the Treatment for PKU - Anne Green Podcast
The patients priced out of orphan drugs BBC Newsnight
Переглядів 875 років тому
The patients priced out of orphan drugs BBC Newsnight
NSPKU 2019 Conference | Tom Chimiak | Me & PKU
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NSPKU 2019 Conference | Tom Chimiak | Me & PKU
House of Commons 21/03/19 - NICE Appraisal Debate
Переглядів 525 років тому
House of Commons 21/03/19 - NICE Appraisal Debate
Patient Voices - Elizabeth & Louise - PKU
Переглядів 1 тис.6 років тому
Patient Voices - Elizabeth & Louise - PKU
Patient Voices - Amy & William - PKU (Kuvan)
Переглядів 8386 років тому
Patient Voices - Amy & William - PKU (Kuvan)
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
EU guidelines recommend levels should be between 200-600, try experimenting with having less exchanges maybe? But its something to talk about with you dietician! Yes you can claim for PIP while working full time, it is NOT dependent on income, its about what help you need!
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
His exchanges might increase in the early tweens due to growth spurt but they do tend to go back down once they've stopped growing
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?
Hi x where to start. Are you on fb x
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.
did you get to start on kuvan?
Awsomiihill nah not yet but I'm sure I will I'm of the age rage for it
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 :)
Stephan-Angelica Johnsen exchanges is the about of protein that's in a food, so if there's 1 gram of protein in 6 chips then it will be 1 exchange 1 gram of protein =1 exchange
Oh wow i would never have guess this! Thank you so much!
Stephan-Angelica Johnsen It's okay, I'm just glad someone is learning about it as most doctors don't even know about pku, it's like we don't exist
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.
It isn't good its terrible.
I feel you brother is best to have friends that have pku
Louise's experiences mirror mine almost exactly x
Same