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I have PKU as well and I am 36 years old with 5 healthy children! 😊

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.

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.❤

This really hits home with me. I have classical pku,and I used to enjoy eating out, but there is almost nothing on the menu I can have. I have my hopes pinned on palynzique being approved In Canada.

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 😮

Any updates? Anything better for you?

This scares me our son is 16. We have good insurance. I get things covered. I hoard them! I get samples anything I can! I will advocate with you! I have a medical background. If my son does not like a formula I help a friend out. This is crazy. 😢❤

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%.

Does anyone have the musty odor symptom from having pku?

I have experienced the low energy I am on pku shots but the dietitian stop me from the formula and PHE bloc due to very low level and my goal 50 grams of protine each day

Thank you for your story. I so relate. I have classical PKU. Love to talk blessings always. 🙏✌❤

So sad right ? My daughter has classic version . 😢she’s 18 so scared for her …

Nice place you got there.

ｐｒｏｍｏｓｍ 😆

I don’t remember much of my childhood but I went off diet at 13 and I’m 18 now still struggling with getting back on diet. Any tips? I could use them

I think I've cried several times this month. Trying to get my insurance to cover my toddler's food. I am so sorry you are having to deal with this!

The american health care system has always baffled me.. it's so disfunctional.. I'm so sorry for what you're dealing with

I hear ya. I have PKU too and experience the same symptoms when I'm not up on my meds. I've had my insurance, Premera Blue Cross Blue Shield, deny my access to Kuvan because they deemed it not necessary. My PKU doctor had to contact them personally to say it is necessary. And then, as soon as the generic stuff came out, my insurance switched to paying for that immediately. It's pretty ridiculous what we have to deal with insurance-wise.

What majority of people don’t understand about having PKU yes with the absence of protein or local to diet there a high chance of frequent hunger. Because there’s no proteins to sustain calories. As someone living with PKU I really push carbohydrates in my diet. Low protein rice or imitation rice fills you up really fast more than PKU pasta. Everyone’s body is different and everyone has a metabolic set point people have a fast metabolism burn calories like crazy and appears to be skinny some individuals hold onto calories without even trying they tend to be on the bigger side. One perk of having PKU is it’s near impossible to develop diabetes because our body cannot break down proteins without protein we still need calories what people consider junk food is a good source of fuel for someone with PKU. Individuals with PKU that are endomorphs Burns a lot of calories the absence of protein the body it to hold onto food consumed as fat weight as it’s trained to conserve energy. That’s why it’s important for people in general especially parents not to make fun of people’s body. Your body like a cash register when you don’t eat enough food your body signals hunger for food until you meet the calorie demands your body is at. Someone is constantly hungry and cutting food back it affects the mental state and increases the risk of mental illness. That’s why it’s important not to make fun of peoples bodies that’s where most eating disorders stem from

Can u help about explanation of pku disease that u made video for it from 1 year,im university student and I want to research about it Is there is communication tool?

thankyou for sharing this video I am 31 years old and have pku.

I have classic PKU as well. I am so glad you are making a channel about PKU. I start Palynziq tomorrow and I wish you luck on your PKU journey 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 pku

I hace pku

Your very inspiring! Thankyou for sharing your story ❤️

Me and my brother both have PKU

I also have PKU and started following you on Instagram. I’m a triplet and two of us have it. Me and one of my brothers.

I discovered you on Instagram I love ❤️ your RUclips Videos and Instagram post. I just wanted to say that I also have PKU and a triplet one of my brothers have it with me. And My other brother doesn’t. Love your blog on the PKU page

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 . :)

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!

I love that you hid all of that stuff, it can be so toxic especially in our current situation. Without knowing it pollutes the mind

Where do you live please I wish I can meet you

People can be such jerks sometimes, you said it right, body positivity isn't just about the over or under weight communities its for anyone and everyone. Im really glad i found your channel can we please be youtube friends and support each other, im really looking forward to following you journey.

Thanks Haley for sharing your story, very encouraging and inspiring. Wish you to achieve your dreams and big success in your study.

? Nice one, keep up the great work! Have you checked followsm . c o m? It will help your videos start to trend!

If all people was have only one size body, it was not interesting life

Oh wow, that is very hurtful... I'll be sending you positivity vibes :-) Remember that "your" voice is important. No one can tell your story the way that you do. Please continue your journey.

that's a interesting point, I am the polar opposite of loosing weight while measuring food from my PKU diet. I have a really high metabolism throughout my childhood, I had trouble packing on weight, on some occasions I even get underweight. I used to have insecurities about being underweight, now I take ADHD meds which often restricts my appetite causing me to loose more weight. I set a scheduled eating time throughout my busy day to snack and eat meals I weigh myself every so often to make sure I gain some weight which doesn't happen and I usually maintain the same weight throughout. On weekends and days off of work I would go off of my medication just to open up my appetite to eat more food.

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 am reaching out to you Haley, it is a tough season for me, I lost my job because of a disease, I hope everything will get better in the future. Have a wonderful day:-)

❤️❤️

Do you have anything that can help a baby who is in preschool? He has PKU and I feel really bad with him making friends. Can you give me some advice?

I have a four year old son and two year old daughter with PKU. Thank you for sharing your experiences and making these videos ❤️

I'm just here for my brother...

Thank you for sharing your story, I'm 27 and have PKU and have a lot of similar experiences thay you, have, it's tough having PKU and no one never really understands how hard it is.

Thank you so much for sharing this. I'm a fairly new PKU mom, so keep the good information and insights coming! One question for you: Did you have any friends with PKU? It sounds like you had a small town/school, so perhaps not in your town, but did your clinic connect you with anyone else who was going through what you were going through somehow? If not, do you think that would have helped you feel less "different"?

First off you are beautiful.secondly you are touching on a lot of stuff that I am facing. I have the hardest time getting on diet bc one day I decided to eat meat and foods that I'm not suppose to and now I am literally addicted to those foods. I feel like there needs to be a pku rehab for people like me who have become addicted. Food has become my drug. I hate it but can't change it

I don't remember much of my early experiences how other people reacted to my eating habits. It's interesting to hear your story. What I can say for sure is that this thought of being different and odd, that you talked about, is still with me today and it's probably mostly because of my early experiences with others and being treated differently because of Pku.