Phenylketonuria: Is it a Positive or a Negative Thing?

This morning, I was tempted to give you a reflection after seeing a question on a Facebook group.

I subscribe to a few Pages and groups that deal with phenylketonuria and on one of them, someone asked a simple question, but it raised passions.

What is the thing you prefer with having PKU?

Personally, I think that’s a good question. What do you prefer? What does it bring you? In your opinion, how does phenylketonuria shape your life or help make you what you are today? In short, an excellent question!

Being someone very positive by nature, I immediately saw a lot of positives things to mention, but it seems that this is not the case for everyone. So I read carefully. Indeed, I noticed (at least on this publication) that it is far from easy for some. Some people simply could not think of anything positive and it even generated rather tough discussions.

My opinion, a priori, was that we receive and think of this question in the same way that we take life in general. I am happy, I am positive, for me phenylketonuria is a way of life rather than a disease. I made the choice of taming it rather than being controlled by this condition. So by default, when I’m asked this question, I see a lot of positive aspects. I do not say that there are no negative points. There are restrictions that can make things difficult sometimes. But in my opinion, it is the way we manage them that helps to make things pleasant or unpleasant.

That being said, I am not in the same shoes as everyone and I understand that the hazards of life can sometimes make things more difficult.

I would really be interested in knowing what you think. 🙂

I leave you with some positive comments that were published under the question in the Facebook group:

  • The wonderful people in the PKU community that I met.
  • The sense of community and the help I get from others.
  • Being healthy with all the fruits and vegetables I eat.
  • Exchanging recipes so I can eat them.
  • When I do not want to eat something that looks disgusting, I can put it on the back of phenylketonuria.
  • Since I have a child with phenylketonuria, the whole family has opted for a healthier lifestyle.
  • My 8 year old son loves his formula.
  • Feeling unique and healthy.
  • Phenylketonuria is the most manageable metabolic condition and I am grateful for that.

~ T

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