My name is Kevin Alexander, I'm 31 years old, and I have PKU, also known as Phenylketonuria. This is my story. Help us caption & translate this video! amara.org/v/Dzp6/
I was diagnosed with autism at age 2, grew up meaning deaf, meaning blind. I have gut, immune, metabolic disorders. my diet has to be gf, cf, legume free, low sugar, low salicylate. without this my brain and body get fried. Watching those with PKU who stay true to diet is very helpful for me in not feeling crazily alone with my own dietary wheelchair.
Thank you for sharing. As a parent with a baby born in September with PKU I find your story inspiring and uplifting. We are attending our first PKU walk next week and seeing this now provides me with extra motivation to raise funds.
I'm a Father of a daughter who has PKU and we live in England. Just came across this post as my grandson has PKU and my daughter is doing a cooking blog for PKU. Absolutely inspiring loved the post. Thank you.
I am lucky to of been born in America in the 21st century and be diagnosed in the first 2 weeks of me being alive, seeing these channels and seeing what other people are going through makes me no uncomfortable with my condition. I sometimes think I should just eat normal food to be normal. But knowing what could of happened and how I’m am so lucky to be born in the right place and time, I shouldn’t give it up for just trying to be normal.
I have pku and it is challeging to live with this, i was diagnose at age16 kind of late. Due to the country where i born at the time didnt have knowladge to treat it.
thank you for this video! what do you think, if a person resumes his or her diet, is the excess phenylalanine deleted from the brain with the blood? if we look on the experiments and testimonies, I would say yes.
Hello, I also have pku. And am having a hard time finding people who will help me get the foods and medical care I need. I live in Washington state. And can not afford insurance. But once you become an adult you do not receive the care you need in visits with a dietician or even being able to get on the new medications that they now have. Can you point me in the right direction?
Thanks for watching and commenting! Have you seen the longer version? It's available on my channel's homepage. Also, please subscribe to the channel. I've got more videos coming over the next few months...
Thanks so much! Can you email me? I can give you further direction on this. Much appreciated! TH-cam won't let me post my email here, so I'll have to spell it out.... kevin (at) creativecontrolfilms (dot) com
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I was diagnosed with autism at age 2, grew up meaning deaf, meaning blind. I have gut, immune, metabolic disorders. my diet has to be gf, cf, legume free, low sugar, low salicylate. without this my brain and body get fried. Watching those with PKU who stay true to diet is very helpful for me in not feeling crazily alone with my own dietary wheelchair.
Thank you for sharing. As a parent with a baby born in September with PKU I find your story inspiring and uplifting. We are attending our first PKU walk next week and seeing this now provides me with extra motivation to raise funds.
Great story! Thanks for sharing
I'm a Father of a daughter who has PKU and we live in England. Just came across this post as my grandson has PKU and my daughter is doing a cooking blog for PKU. Absolutely inspiring loved the post. Thank you.
I have classical pku and is hard staying on diet due to low income. But this is so inspiring!
You are so brave and very strong person✨
I am lucky to of been born in America in the 21st century and be diagnosed in the first 2 weeks of me being alive, seeing these channels and seeing what other people are going through makes me no uncomfortable with my condition. I sometimes think I should just eat normal food to be normal. But knowing what could of happened and how I’m am so lucky to be born in the right place and time, I shouldn’t give it up for just trying to be normal.
hey im 15 with cpku this really helps :) thank you
hey im 28 y/o and i have PKU also. Big love
thank you
Hey kevin, i was wondering if its possible for me to use your video for a project that i am doing about PKU?
Nice video Kevin, I'd like to translate it into Spanish, how can we do that?
I have pku and it is challeging to live with this, i was diagnose at age16 kind of late. Due to the country where i born at the time didnt have knowladge to treat it.
thank you for this video!
what do you think, if a person resumes his or her diet, is the excess phenylalanine deleted from the brain with the blood?
if we look on the experiments and testimonies, I would say yes.
The human body is amazing. And the brain has been known to repair its self. As long as you care for your self. I believe it's possible.
Hi Kevin I have tried emailing you but it has been returned interested in using your film.
I have it too my name is talon I am 12 I've had it all my life so far and every day I have to take a thing called Kuvan
hi kevin its mia will singletarys sister
i love you
Hello, I also have pku. And am having a hard time finding people who will help me get the foods and medical care I need. I live in Washington state. And can not afford insurance. But once you become an adult you do not receive the care you need in visits with a dietician or even being able to get on the new medications that they now have. Can you point me in the right direction?
Are you eligible for Medicaid?
NORD
Thanks for watching and commenting! Have you seen the longer version? It's available on my channel's homepage. Also, please subscribe to the channel. I've got more videos coming over the next few months...
You look like james franco
My sister has this and has an extremely low phe level severe pku
I have this as well
Thanks so much! Can you email me? I can give you further direction on this. Much appreciated! TH-cam won't let me post my email here, so I'll have to spell it out.... kevin (at) creativecontrolfilms (dot) com