New to web site.....

New to web site…..

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New to web site…..

December 2, 2009 in Uncategorized

Well I just joined this web site so I thought I would post a blog. I am 24 years old live in So. Cali the only one in my family with PKU though my family is very supportive I just needed to talk with people who live with it everyday like I do. Holidays seem to be the hardest time everyone eating what they want when they want…then there is the extended family I love my boyfriends family but trying to explain to them why I cant have protein is exhausting sometimes I know they just want to know more about it but I get tired of explaining it. I feel like I have had to do that my whole life…Hi my name is Stephanie….I can’t have protein because of a genetic disorder….does any one else feel like that or is it just me? I mean don’t get me wrong I am happy and thankful everyday for my health but some days its just hard and I do not think anyone in my family can really understand how difficult it can be. One of the main reasons I joined is that my boyfriend and I are talking about getting married and having a family which I am excited about. I have been out of the PKU loop for a few years now and decided now is the time to get back in to prepare for my future. Well thanks for listening I feel better already alt Steph65

4 Reviews of New to web site…..

  1. Registered: Sep 8, 2009

    Posts: 0


    Hi Steph :-)

    Welcome to the website, its great :-) i love getting loads of advice and keeping in contact with people who live there lifes exactly like i do.

    I am Nicole, am 27 years old from Scotland, UK. I have Classical PKU. I am here to try and get back on my Low Protein Diet. I have done the whole maternal side of PKU, as i have 2 healthy non PKU girls, was hard but worth it.

    So if your looking for any advice or any questions to be asked, fee free to ask me x

    Once again Welcome and i hope you enjoy this website as much as i do :-)

    Nicole x

  2. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Stephanie! Nice to meet you. The great thing about this blog is that everyone on here understands how hard the diet can be & it’s a good place to come & feel like you aren’t alone in this! Hope to see you around here :)

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hey Steph — I am 25 and have PKU too. I totally get what you mean about hating to explain PKU everywhere you go… Recently, I have started to tell people I just have a lot of food allergies… Usually, people stop there… If it is someone I seeing often (like co-workers) after time, I open up and explain it to them. I used to hate explaining it, but if it is someone that will be around for some time, for me… I rather them know. I do get it though.. sometimes I just don’t want to talk about it. Welcome to the website. It is a great place to connect with others who have PKU and experience the same as you!

  4. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Hi Steph! My name is Breanna. I am eighteen, and two of my sisters and I have PKU. I understand what you mean about trying to explain PKU to others. Throughout high school I hung out with the same group of friends, so after explaining PKU a few times they understood that I ate differently and that was that. Of course they asked questions, but it never bothered me. They were just being curious. To be honest I never go out of my way to explain PKU to people I rarely see or do not know well. I use simple excuses such as ‘I don’t like that’ or ‘I already ate.’ This is not because I feel uncomfortable with explaining PKU (because I have absolutely no problem with that), but because I believe if people who do not have PKU can eat what they want without needing to explain themselves, then why can’t we? It just makes no sense to me why we should feel the need to ‘defend’ ourselves, our actions, and our decisions in what we eat. Obviously you cannot use the ‘I don’t like that’ excuse with your boyfriends family, because they could potentially be around for the long run. When you do explain PKU to them try not to give them long, scientific answers. Give them the basics, the stuff that they will remember, so hopefully they don’t have to ask over and over again, and you won’t feel like a broken record :). Anyway welcome to the group, and good luck with starting a family! We will be here willing to help when you get to that bridge.

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