Community Discussion Forum That’s PKU life! PKU Documentary

Viewing 13 posts - 1 through 13 (of 13 total)
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    Avatar of Tracey

    I have a cousin with PKU and am currently producing a documentary on this condition. Our goal is to increase awareness of PKU in the general population and to provide those with PKU with a resource as they transition through the different stages in their lives. We would like to have 4 -6 main story lines including: Someone with PKU who is pregnant or trying to get pregnant, Parents of an infant who was recently diagnosed, a child starting school, a teenager just leaving home or heading to college, and an adult who’s diagnosis was missed. The documentary will be supplemented with interviews from professionals including doctors, teachers, authors, legislators and family members of the subjects. If you would like to tell your story or have information that you feel is important to include please contact me. Thank you.

    Avatar of Breanna

    I don’t know if I fit any of your categories because I’m not a child just starting school and I’m not out of the house yet. My name’s Breanna, I’m a senior in high school. I have PKU and I have two sisters who have PKU.
    I’m not sure how I can help with your project, but it sounds interesting! If you have any specific questions that I could answer I’d be more then happy to help

    Avatar of Tracey

    Hi Brea, Thanks for your reply. What state are you located in and how old are you sisters? Thanks, Tracey

    Avatar of Keith

    Hey this sounds like a great project. I was thinking a couple years ago that someone should make a documentary like this. One thing you should include in the documentary that you didn’t have listed is you might want to have an adult with PKU trying to get back on diet. I know how hard it is because I am trying to get back on my diet after 8 years of being off.

    Avatar of Jean

    Hi Tracey,
    I love the sound of your documentary. I have just started compiling a book of pku life stories, along a similar line. I’m including the stories of adults, teens, children and parents from different generations in order to give an overview of how things have changed since the discovery of pku 75 years ago. I plan to set it out like a timeline starting with the oldest stories and hopefully ending with the story of a family still coming to term with a positive diagnosis.
    I agree that you should include the story of an adult returning to the diet, as I can confirm how difficult this can be for most people. Find someone over the age of 40 and you’ve probably found one. nGood luck with it.

    Avatar of Tracie

    Hi Tracey,
    I don’t know if i qualify for any of your categories.
    I am Borderline PKU,recovery Anorexic,and just recently started back on diet with being off well over 20 years.
    I am on the Kuvan project,and i have a beautiful daughter who does not have PKU.
    I am allowed a fairly decent amount of PHE in my diet.(60 grams a day) nDue to my body does break down some PHE the Drs. just don’t know how much.
    Hopefully i can be of some assitance.
    Take care, nTracie-PKU

    Avatar of Lucy

    Hi Tracy, my name is Lucy and I am 50 years old with PKU. I think your documentary is a great idea. I was on my diet a few years ago, but due to no insurance and the financial cost was too much so went off diet. I also would like to see if we can get government help for people with PKU; especially the adults with PKU. I even at one point dried to get disability for PKU and it is not recognized as a disabiility; yet insurance pays for diabetic supplies. Sounds really unfair. Anyway I am thinking about going back on my diet, but I have no money and no job at this time. I live in the state of Texas. I was looking for a clinic and a doctor I could see but with no money I am not sure what to do. I want to go back on diet, because my memeory is not good. When I was on diet I was really mentally sharp. I am also wondering if PKU has to do with depression? I am thinking it does. My younger brother has PKU, but he has a really bad temper and my older sister is an RN and PKU free said it was the PKU that may be causing it. I tried to talk to him about it but he will not accept that it is PKU his male ego won’t handle it. Anyway great idea on the documentary. Would like to know how is comes out and maybe I could help not sure what you need. Thanks for reading my post.
    Lucy-CPKU nTX

    Avatar of Tracie

    Hi lucy, ni just got done reading about your concerns about no coverage on PKU.
    I can definitly relate to your situation.
    Look up GHPP in Texas.I believe it is offered there. nFull name is Gentically Handicapp Persons Program.It is specificaly for PKU.
    It covers everything from formula,foods,and even Pregnancies.
    Hopefully i was a little help. nGood luck,and don’t give up.

    Avatar of r

    I might qualify for this. I’m 16 and a junior in high school. I’m going off to college in just about a year from now. But I am on Kuvan I have been for a year now and I eat absolutly anything I want and my levels stay at 2-3. Still, I have PKU and I have to be responsible and take my Kuvan pills everyday. n-Bianca

    Avatar of Jennifer

    This would be so awesome!! Would I qualify?? I’m a 20 year old at college right now in Nebraska studying pre-med!! It’s my PKU that really inspired me to become a physician in the first place and is probably what got me my scholarship in which I have guaranteed admission to medical school in Omaha!! Just send me a message if I could help at all!

    Avatar of Rebecca

    Hey there! I am a 34 year old Mom of one little girl. I have been to college with PKU, and I have had clearly a pregnancy as well. Not sure if you need any information from me or not, but I would be glad to tell you anything you need to know! I Love that someone is trying to get the message out there about this disorder! Drop me a line if your interested!

    Avatar of Rebecca

    Don’t know if I qualify but I am 34 and have lived away at college, and had a baby. Did very well with my PKU during pregnancy. Hope to hear from you very soon this is a great idea!

    Avatar of Meaghan

    Hi Tracey, My name is Meaghan Young and I am 20 years old and am going to be a senior in college. I have classical PKU and am only allowed to consume 5 grams of protein a day. I feel like this is an important part of life to capture for a PKUer because of the issue with insurance. I am forced to either immediately get a job or continue education because of the cost of medicine and food no longer being covered by insurance after college. This has diminished my dream of being an actress because I do not have the luxury to wait around and audition after college is over because of the cost of managing the diet. Also, I know the difficulty of having colleges agree to help out with the diet, thankfully I go to Siena College who buys all of my food for me but I had to meet the chefs of every school I visited and I know how naive some of them were. Let me know what you think! Sincerely, Meaghan Young CPKU 20 years old

Viewing 13 posts - 1 through 13 (of 13 total)
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