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.
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
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.
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!
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😕
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
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.
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.
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.
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
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
Thank you PKU here appreciate you.
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!
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😕
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
Louise's experiences mirror mine almost exactly x
Same
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.
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 . 😢
update please, how are you?
Hi x where to start. Are you on fb x
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.