This site uses cookies. By continuing to browse this site, you are agreeing to our use of cookies. More details

    We are happy to see you visit us as a guest.
    Some functions require a free registration. Become a member!

    • film/documentary

      Hello everyone. I dont know if any of you really know much about me or what I am doing but, I am currently a Film Student in Los Angeles, I am seriously thinking about creating a movie about an individual with P.K.U. I dont yet know if I should make a documentary which would follow several peroples lives, or make it a holywood type film with a story. I would apreciate any advice on the matter. Or any personal stories, or ideas or experiances with P.K.U.

      I think that the general public has no idea whatsoever what PKU is, or how it effects an individuals life, other then diet restrictions. i think becuase of P.K.U an individual with the dissorder has a very unique experiance and perspective on life and it is a perspective which should be shared with the public.
    • I vote for a...

      You know many people love films based on a true stories so I guess inthis case it`d be the best to choose the most intresting one which will show what PKU is and that people with PKU are the same as others and that thanks to a good screening, thx to to life long diet they can be in a good shape.
    • Hi Phil;

      Great idea, but as you state yourself it's difficult to grasp what would attract people to see a movie about someone with PKU. I think you have to look at the aspects that make us different from other people and especially what makes us different from other people with inherited disorders (treated or not). I find it hard to say in what aspect we differ from other (non PKU) people. Apart from the fact that we have a diet to keep us on the right track, I do not see that many differences. We have the same problems that non-PKU's have like accepting yourself for who you are, succeeding in social life, succeeding in professional life, lifepath planning, etc.

      Paul van Berkel
      Eindhoven, The Netherlands
      ESPKU Boardmember / Project manager

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • Paul is right.We PKU people have the same problems as non PKU. PKUs stories at least as I far as I know are very similar. That is why I think you should chose one story and PKU can be one of the very important aspects of the story. Or you can make a movie how hard it is to change your life stuyle when for example at the age of 10 you are told you have PKU and you are don`t know what it is and the shock it causes.
    • I really think that the history of PKU needs to be told in this documentary/ movie from the very first PKU diagnosed and the part that Dr Folling, Willard Centerwall who was responsible for the wet diapper testing for PKU, Robert Guthrie, Dr Woolf and Dr Koch have in the history of PKU. Dr Koch is still working with PKU patients.
      As for my history I was late diagnosed at the age of 2 years and 4 months. Nobody had ever heard of PKU before my diagnosis as the night before the medical journal arrived from the U.S describing the wet diapper testing for PKU which Willard Centerwall discovered. My mother had to actually really demand that they test me as the medical professional told my mother that it was too late to test me and to put me into a home.
      To cut a really long story short my mother lobbied for the screening for PKU to be brought into every hospital in Australia and within the next three months after my diagnosis the screening for PKU was introduced in to most of the hospitals in Australia.
      The story of PKU really needs to be told and it is great that you are able to be able to create awareness by the documentary/film
      debbie colyer
    • Thanks for all the input, interesting. At this point I am just throwing around the idea and seeing where it goes. To clarify at least from my point of view the way we differ from non PKU people is more then just diet restrictions, It has impacted the way I psychologically, spiritually and physically live my life. Non PKU people do not have the same perspective on life a PKU person does ( I guess I can only speak for myself not all PKU inflicted people) for myself, I live everyday of my life knowing that I could have easily not got the chance to experience all of life’s positives and negatives, ups and downs, highs and lows had I been born earlier in time, had I not the great parents I do to help , had a treatment never been discovered, had I not decided to stick with diet, and so on and so on… I don’t think the average person can have this perspective on life. Humans as a general rule take for granted there life, because of PKU I do not. This is the one and probably only reason I am Appreciative for my PKU. In a sense it has woken me up or opened my eyes to life. This is what I would hope to demonstrate in a film.
    • I certainly agree with you as I do appreciate everything my mother has done for me and other people. We are unique and people with PKU generally have a deeper sense of life in everyway than the non PKU people (I am not speaking for everyone just myself). Whatever you decide to do just know we are all supporting you 100 percent. :)
      debbie colyer
    • I remember when my brother was diagnosed with PKU (he was 6) my mother was sitting in guest room crying. I have never seen her like that before and now. My dad was sitting watching TV - but he seemmed that he really didn`t know what was on TV there :( I was just a watcher, observer. Later it turned out that they want to examine me too. They examined me twice. When it turned out I have PKU as well my mom`s reaction weren`t the same. I remember when for the very first time I went to a PKU doctor. I remember when for the very first time I drunk my fromula. No one who`s not PKU will not understand it. I am sensitive but I`m not sure if it is connecetd with PKU. I know that Phe levels determine how we feel. Maybe mentally we are different but each of us has similar problems as other people in our age non PKU + sometimes problems connected with PKU which are not understood by non PKU people. Personally I think my ife would be different if I were non PKU. So many good and bad things might miss me. Can`t tell ... .

      to Phil - if you actually make a movie about PKU. If it will be a documentary film or a holywood type all of us would love to see it.

      Ok gotta go. Hope you all are OK


      Post was edited 1 time, last by Gosia ().

    • RE: I vote for a...

      sounds like a great idea. In my opinion DON'T try:
      - hollywood type movie
      - "discovery channel" type movie
      you're right that PKU means an absolutely different perspective on life. Also remember that all other people are unique in their own ways. So here you have some options:
      a) follow lives of different PKU people, just telling their stories, sort of a snap-shot of what they are now, and what experiences they had in the past + their outlook on future. Any person on this board has a bunch of unique experiences related to PKU - for example Gosias digasnose (when she can remember how it was done), my immigration to Canada from Russia, everyone's cruasade for good tasting low protein foods. :) And the lst goes on and on.
      b) do same as in a) but try to generalize, i.e. find some common points (like will power, positive mood, etc.)
      c) follow lives of few people, some PKU and some not. Don't tell which one is which from begining, then somewhere half way through make it more obvious that some of these peopel have PKU. This way (especially if you use adult pkus for the movie) you'll demonstrate that at a first glance there is no apparent differnece between "normal" and "PKU" but if you DIG deeper... :)
      Anyway, I'm not quite sure how long your movie is supposed to be and what's the main theme, so here are my few ideas from top of my head. Let me know, if you're itnerested in more thoughts on this topic.
      Carpe Diem!
    • RE: I vote for a...


      In my opinion, following several people around would be very interesting. Have you ever watched that True Life show on MTV? That kind of format is entertaining.

      I live up in Oregon and would be willing to be filmed, if you'd consider that as an option.
      Ali Dietrich
      24 PKU
      Rockaway Beach, OR (USA)
      My PKU Site: The PKU Place
    • @ GreXXL & @ phill

      @ GreXXL

      MTV`s general goal is to entertain people, but True Life shows different stories not always funny sometimes tragical. ;( I one of them they have shown man in my age or a little bit older who were on Iraq and now when they returned they are dissabled because they lost one hand, or one leg, or two legs... . They have shown how hard it was for them to accept it and learn to live with that.

      @ phil

      Before you decide how to make your movie:
      -> documentary
      -> holly type

      decide who`d be the recipient, the addressee of it. The widest audience loves movies with the stories, told in the way that make them cry or laugh ... . If you want teen- agers to watch it do it in TRUE LIFE style :) Lat but not least if you want me to see it don`t make it Discovery Channel documentary - but who knows maybe it`d be interesting :) I know take people from over here and make a movie about us ;)
    • @ phil
      I know what you mean, I also think PKU has impact on the way you develop as a person (positive and negative alike). I for sure know that if I had not had PKU I would not be so persistent in seeing thing through. From PKU you learn, in my opinion, to follow through and reach your goals. Of course this is also influenced by the way your parents deal with raising a kid with PKU. I am eternally gratefull towards my parents in the way they raised me and learned to deal with it. If it was not for their perseverence (if you spell it that way), I would not be as successful as I am right now (graduating with my bachelors degree, etc)

      @Gosia of course there are experiences that you can only have if you have PKU, the formula is one of them. You can let non-PKU's drink the formula but because our sense in tasting things is developed different as non-PKU's their experience will be different, other references than PKU's because they do not know the limitations in taste experience (don't know really how to say it in english, let stand polish)

      There are different ways to view PKU and the PKU population and their experiences, but the question I guess is what do you want to get across to the audiience Phil ? Is it to educate the audience, to entertain them, to... I think you can start there, what do you want to achieve by making the movie ? In my opinion making the movie is not a goal on it's own, but the message you are trying to get accross is...

      Paul van Berkel
      Eindhoven, The Netherlands
      ESPKU Boardmember / Project manager

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.