Hi Hayley, my name is Errol I live in Australia. I was off diet of age eight but now at 59 I find I’m having problems and difficulties with recall and memory loss now I’m back on the P.K.U died again being very restrictive for what I eat what I can’t eat Having the formulas and being blood tested every month to keep my levels down it’s hard but I have to go with it for the rest of my life right now and age 59. I have to continue with it. I watch everyone eat what they can eat where I have to be selective, I hope everything goes well with you. I look forward to watching your videos very helpful.❤
Thank you so much for sharing this1 I,m 62 and have classical pku. . I was born before newborn screening, so was late diagnosed. I was also on the kuvan trial , but it only worked 15%.
Thank you for this! I'm 22 years old, have PKU, and I live in Utah. I have been drinking the formula and been on diet for my whole life, but it is for sure a struggle. It is so hard not to cheat my diet sometimes, and I am a very active person so I sometimes feel that my formula prescription is not enough protein for me. PKU is a struggle, and only people with this genetic disorder understand how hard it is. I as well have unknowingly hurt people's feelings due to high amounts of phe in my blood, and it makes me so sad. I am delighted to see that you are making changes and are happier and healthier than ever. Staying on diet is hard, and there is a lot of good food out there. But I know you can do this because I sense you are a strong person and you will not let PKU take control of you. Living with PKU is a constant learning curve, and I am still trying to figure it out. Best of luck with your future!
Thank you Haley for having the courage and making the time to share your story. It's inspiring and so honest. I am so glad you are investing in your health - you deserve it!
I’m 15 years old and I have classic pku. I follow the diet but sometimes it’s really hard to want to stick to it. People as school say my food looks funny so I feel insecure eating it so I may have extra protein then I am meant to. Recently I’ve been finding it really hard to cope with pku 😩. But I’m happy to know that many people are feeling the same ways as me and they have to deal with it as well . :)
When i was a teen, it was so hard to stick with the diet. Everyone could eat whatever they want, i was so jeaulous. For the past 3 years its going better. I have off days. But now im trying very hard to stick with it, and being very strict. Because in the future (in now and 2 years) i want to have kids. So im preparing myself haha. But it is so hard!
I have to ask, how many of you with PKU are on palynziq? It's been life changing for me. I have beef short ribs in the oven right now. I have classical PKU and was originally allowed only 6 grams of protein a day. Now my blood levels are always below 3 and i eat 75 to 90 grams of protein a day.
how? i accidentally ate a tiny piece of chicken mixed in pasta and was hospitalized for 3 days. i don’t get how people just go off diet and eat meat and nothing happens to them 😮
Honestly, I have only noticed the musty/mousy odor when my phenylalanine levels were extremely high. I often only smell it in my urine or on my fingertips (not related to a lack of washing hands after urinating). My wife says she's never noticed it.
Hi Hayley, my name is Errol I live in Australia. I was off diet of age eight but now at 59 I find I’m having problems and difficulties with recall and memory loss now I’m back on the P.K.U died again being very restrictive for what I eat what I can’t eat Having the formulas and being blood tested every month to keep my levels down it’s hard but I have to go with it for the rest of my life right now and age 59. I have to continue with it. I watch everyone eat what they can eat where I have to be selective, I hope everything goes well with you. I look forward to watching your videos very helpful.❤
I have PKU as well and I am 36 years old with 5 healthy children! 😊
Thank you so much for sharing this1 I,m 62 and have classical pku. . I was born before newborn screening, so was late diagnosed. I was also on the kuvan trial , but it only worked 15%.
Thank you for your story. I so relate. I have classical PKU. Love to talk blessings always. 🙏✌❤
Thank you for this! I'm 22 years old, have PKU, and I live in Utah. I have been drinking the formula and been on diet for my whole life, but it is for sure a struggle. It is so hard not to cheat my diet sometimes, and I am a very active person so I sometimes feel that my formula prescription is not enough protein for me. PKU is a struggle, and only people with this genetic disorder understand how hard it is. I as well have unknowingly hurt people's feelings due to high amounts of phe in my blood, and it makes me so sad.
I am delighted to see that you are making changes and are happier and healthier than ever. Staying on diet is hard, and there is a lot of good food out there. But I know you can do this because I sense you are a strong person and you will not let PKU take control of you. Living with PKU is a constant learning curve, and I am still trying to figure it out.
Best of luck with your future!
Thanks Haley for sharing your story, very encouraging and inspiring. Wish you to achieve your dreams and big success in your study.
thankyou for sharing this video I am 31 years old and have pku.
Thank you Haley for having the courage and making the time to share your story. It's inspiring and so honest. I am so glad you are investing in your health - you deserve it!
Your very inspiring! Thankyou for sharing your story ❤️
I’m 15 years old and I have classic pku. I follow the diet but sometimes it’s really hard to want to stick to it. People as school say my food looks funny so I feel insecure eating it so I may have extra protein then I am meant to. Recently I’ve been finding it really hard to cope with pku 😩. But I’m happy to know that many people are feeling the same ways as me and they have to deal with it as well . :)
When i was a teen, it was so hard to stick with the diet. Everyone could eat whatever they want, i was so jeaulous. For the past 3 years its going better. I have off days. But now im trying very hard to stick with it, and being very strict. Because in the future (in now and 2 years) i want to have kids. So im preparing myself haha. But it is so hard!
I have to ask, how many of you with PKU are on palynziq? It's been life changing for me. I have beef short ribs in the oven right now. I have classical PKU and was originally allowed only 6 grams of protein a day. Now my blood levels are always below 3 and i eat 75 to 90 grams of protein a day.
how? i accidentally ate a tiny piece of chicken mixed in pasta and was hospitalized for 3 days. i don’t get how people just go off diet and eat meat and nothing happens to them 😮
Does anyone have the musty odor symptom from having pku?
Honestly, I have only noticed the musty/mousy odor when my phenylalanine levels were extremely high. I often only smell it in my urine or on my fingertips (not related to a lack of washing hands after urinating). My wife says she's never noticed it.