why the shame?

why the shame?

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why the shame?


August 27, 2010 in Uncategorized

You know it is really good for children with PKU to meet others with PKU. You see, my dad did a great job of caring for me and making low protein foods- the bread was NASTY (but he tried), but the spaghetti was awesome. He kept me on a strict diet and I did well. However, I never met another person with PKU. Many born shortly before me probably went untreated and were not able to function well. But, obviously, I was not the only one with PKU. I grew up not really understanding this. I grew up feeling like an alien. Not a foreigner, but from another planet. Needless to say, I was very private about PKU. I hid it from people. When I was really young I said I had a special diet, but as I grew that information was never shared. Once I was given the green light to have meat and stop with the drink, I really hid it all away. Whenever it came up I said I was allergic to milk (I have only tried milk once- thinking it was my formula when I was about 5 and nearly- or maybe literally- threw up) or just changed the subject. PKU was a source of shame to me. I had times in my life when I was bitter and angry for not being "normal." I don't know how all the pieces fit together to make me feel such shame about PKU, but it did. I get a real joy reading things by people like KATIEMAG16 and BREAMARIE91 (and others, this is not an exclusive list!!), who seem very well adjusted. All the parents and grandparents, etc of children with PKU, look to folks like them and learn how to avoid the shame. Or look at stories from folks like me who learned shame from events in our lives and try to help the children to shun the shame. Realistically there is no reason to be ashamed of PKU. Like I always tell people about other conditions: "Every one has something." Just my $.02!

4 Reviews of why the shame?

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Thanks. I am glad I am able to help you realize that having PKU is okay. What you are doing now, can be quite helpful for parents too. Teaching them that it can be tough and it is not always easy. There are many children (or now adults) that grew up feeling the way you did. We are all different and handle things different. There were some times for sure where I felt, why me? One day I pretty much woke up and said I can either live my miserable life without drinking my formula…. or I can suck it up, drink the stuff, and enjoy my life… I obviously chose to live the happy life :)

    How are things going with your diet? Have you been able to cut back?

    Oh, one more thing.. I never knew anyone with PKU myself up until about 2 years ago — very helpful to know there are people in your shoes

  2. Registered: May 27, 2009

    Posts: 0

    , Florida

    Hi Katie! My diet is not very restricted yet because we need to test for responsiveness to Kuvan.

    As far as why me, I now ask ‘why not me?’ or even why was I blessed to be born after they began to treat PKU- after they began testing at birth? It could have been much worse- and was for too many. I am thankful that children with PKU now have an even better chance to have a good life with all the advances.

    I hope that we can help PKUers to avoid shame and stigmas. You do a great job of that Katie! Keep up the good work!

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hey again! When are you starting the Kuvan? I hope you are a responder :) I’ve been on it for almost 3 years already! Time sure flies…

    I find it easier to look at the positive sides of having PKU.. there are alot of them.. Sometimes it is tough to look at the positive side of things versus the negatives, but it makes you enjoy life much more.. I am glad you are starting to view PKU as a good thing and focus on all the good aspects.. You are right – PKU children are blessed now with how much research is out there and the variety of foods and formulas now available to them.

    You keep up the good work too… Your positive attitude will rub off to the PKU community! I have no doubt about it.

  4. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I’m glad it is becoming easier for you to cope with PKU. Good luck with starting Kuvan. I really hope you respond :).

    My mom was the president of the PKU Organization of Wisconsin for a good ten years when I was growing up, so as a child I was always surrounded by others who have PKU. However, I wasn’t always well adjusted and positive towards the diet. There was a time when I had some of the feelings you described. The preteen years were the hardest for me, but like Katie one day I woke up and realized feeling sorry for myself wasn’t getting me anyway. After I realized everyone has something, and I am lucky to have a disorder that is manageable I was able to spend more time enjoying my life rather than sulking about food, which is such a minuscule aspect of my life compared to everything else.

    Keep blogging and sharing your wisdom with the PKU community. We can always learn something new from one another.

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