Isolation… "Like an Outsider in Life"

Isolation… “Like an Outsider in Life”

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Isolation… “Like an Outsider in Life”

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December 22, 2010 in Uncategorized

I still think back to how isolated I felt growing up with PKU. No one understood. Doctors and medical professionals did not understand. How lonely I felt at times. I finally met others with PKU in September, but now only know people through PKU.com and FaceBook. I encourage parents to keep this in mind for children with PKU. Help them to meet someone else with PKU- and take them to PKU related events. That would have been helpful to me when I was younger. My dad had no way of knowing that, and I really did not understand why I felt so much like an outsider in life. Anyone in the Tampa Bay area with PKU can feel free to contact me and we can get together- I have a wife and two daughters who are just now getting to understand PKU. If you are a parent of a PKU child, we can still get together and the child can see that PKUers grow up and can have non-PKU children. It is healthy to promote social events for people with PKU.

4 Reviews of Isolation… “Like an Outsider in Life”

  1. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    This is really good of you! I am nowhere near you but I think it is lovely that you are offering to meet people! I felt exactly like that growing up. I really felt like the only person in the world who had PKU! I wish there were more people that I could meet. The two ladies on here that I speak to are MILES away!! x

  2. Registered: May 27, 2009

    Posts: 0

    , Florida

    I guess there are more people in the Tampa Bay area with PKU than I realized. My nutritionist is working on setting up a social event with me and some others whom I do not yet know.

    It was a relief to me to meet people with PKU last September, even though by then I had contact with others through FaceBook and maybe through here. What state do you live in? You might find others through PKU Challenge or your state PKU foundation (if it has one). I will try to help you find others if you wish. Just let me know.

  3. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Yeah when I was younger, my hospital organised social events for the children. I haven’t heard of any since I have transferred to the adult clinic though. I should ask my dietician I suppose! I am, yes in England! x

  4. Registered: May 27, 2009

    Posts: 0

    , Florida

    My dietician is awesome and we just had a cooking class for PKUers that BioMarin helped to set up. It was great to meet others with PKU again (for just the second time).

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