Confessions of a PKU Cheater
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- เผยแพร่เมื่อ 14 พ.ค. 2024
- Erin Grisley, a lost to follow-up PKU patient talks about her years of being non-compliant to treatment.
Phenylketonuria (PKU) is a rare genetic disorder that causes a build up of phenylalanine in the body. People with PKU need to follow a strict diet that limits phenylalanine, an amino acid present in most proteins. As Erin notes in this interview, adhering to that strict diet can be difficult.
This interview was made possible by a sponsorship from BioMarin Pharmaceutical Inc. Rare Disease Report has sole control over the editorial content. - วิทยาศาสตร์และเทคโนโลยี
“Confessions” and “Cheater” are two words that shouldn’t be used to describe someone who’s not on a PKU diet but has PKU.
They are just another person eating food.
I was taking of diet at 6 and didn't put me back on diet until late 1990 i am an old one born 1966 have a learning disability now and life is some what hard i am on disability now and have a case manager to help me to understand things whem i get mail or form for review from the state and government i am on ssa and ssi i am on housing program and i live a lone its hard because i have a learning disability need help to some extent sometimes it can get hard to mage my affairs and that can stress me out iam 52 years old so hi out there to others with living with pku its hard but i don't give up
I’ve been off the diet since I was 6 years old. I’m 31 now and I’m still good. Maybe I am a rare case but both my brother and I are normal. Thank God.
That's great! So happy for you
I've been off diet since 18 and wasn't real good before then. I'm 38 now and even my clinic tells me whatever I'm doing seems to be working
I get this totally. 62 late diagnosed pku
dealing with headaches and malaise due to a mild form of pku, I try to crowd out the phenylanine with BCAA amino acids, and I seem to be able to deal with the headaches, insomnia and general malaise using lemon grass tea.
I have PKU to you just proved to me that I'm not the only one that has PKU
I'm was a PKU cheater as well and I still am a PKU cheater.
John Doe how are you doing? My 12 year old son and 4 month old daughter have PKU.
isma ahmed Watch them man. Make sure everyone knows and they know. It's tough living with the side effects depression can sit in almost instantly when I think back on my high school and middle school days being off diet. Best wishes brother.
Ive loosely followed diet. I regularly eat bread and starch but still avoid all high protein foods (aside from the occasional cheesecake). Level is probably always around 12 give or take for last 11 years. No symptoms yet.
shifter3de 12 is super high should be around 4-6
Intermittent fasting and coffee with fat really help me. I crave all the foods and have gained a lot of weight trying to stay low protein.
I wish I could get my level that low. When I was little I think I saw a ten once. Mostly off diet now I'm 38 now and still doing good.
I agree! 12 is too high. It’s all about how much phe is in your blood that can damage the myelin sheath that surrounds nerve fibers. Actually, just learned that sugar does the same exact thing in diabetics with neuropathy which is nerve damage in the hands and feet! For us who can only eat sweets this becomes a double whammy as there are two things causing the same damage to the nerves!
I asked them in my teens not to buy Glen 20 as I was nearly passing out. Next week in the cupboard were two full bottle's not just one.😳
I don't get how cheating has anything to do with PKU.
I'm sorry but the "cheater" label under someone's face, especially when they struggle with unfair situation is terrible.
its an up hill battle all the time
It’s kind of a side hill battle actually
@@fernsader9261 not easy for sure
Not even remotely PKU here, but the recipes are deadly good...I use them to keep my vegetarian noms up to date. For me, it's just a choice so my stomach doesn't bother me. For you it's your brain. I met a friend of mine who has PKU in my radio days, nearly 20 years ago, and I drank his formula once by accident (he had it in a coffee cup lol.) Didn't bother me much, but being old-school Eastern Cherokee, I've eaten most anything lol.
Formula is mostly ass. lol... the trick is finding the one that is the least foul tasting for you. Well, not *YOU* but, you know what i mean :P
I think the language used here on the title and in the description is really unhelpful for people with PKU, and I feel sorry that this lady uses the language of ‘cheating’, something I never heard when I was a child. The dietary treatment for PKU is incredibly hard and inadequate -no one would choose this as a form of treatment - that’s why better treatments are needed and being worked on. People should not be made to feel like they have or are ‘cheating’ or that they are ‘not complying’ with a treatment that basically hasn’t changed since the 1960s and cuts out 80% of normal food - it’s both extreme and not fit for the 21st century in many ways. Parents and clinicians really need to understand how unhelpful using this language can be and actively think about how they are framing the diet. The language of ‘cheating’ and ‘compliance’ leaves no room for compassion (the diet is not a test and as a set of rules I challenge anyone to adhere to it perfectly) and this language can cause real mental health issues for people with PKU - please think about renaming this video and how the interview is framed in the description.
I looked at the ingredients and self determined I was PKU. Wrote it on my medical allergy file to which later I see the surgeries remove this.😳✌️
Unless you have a liver transplant it can't be removed. Why not take a blood test to see
You can't self determine that you have PKU. If you're old enough to determine that you have a specific disorder and haven't ever been diagnosed with PKU then you won't be mentally able to even read let alone make self diagnosis.
It's definitely not easy, especially when it comes to making food because you would have to make it separately. I have 7 grams a day, it's not much but I'm grateful.
I get 5 or 4 the doctor changes it to try and get my phe levels lower.
@@gabriellabryant775 are the levels consistent or do they change from time to time?
@@AB-pw4wu they change a lot and they are always really high. I haven't had normal levels since I was a baby except for one time and of my moms ex boyfriends really helped me and one week we all were really happy I got my levels normal.
@@gabriellabryant775 well I wish you the best and hope your levels are normal, I know it's not easy sometimes but you can do it!!!!!
@@AB-pw4wuthanks. It is really hard and I know no one with PKU no one in my family has it so they dont understand fully what I'm going through but I know they try.
Did she have any seizures in her life?
I hope my current fog goes away