Hi everyone! I wanted to do a little feature every once in a while called "PKU Spotlight", where instead of me talking about my experiences all the time, I'll share testimonies of other people from around the world who also have PKU. Francesca and I met through Instagram after she had read my blog and I asked her if she could share her experiences with PKU. She is a beautiful, inspiring, encouraging and kind woman from Italy who hopes that sharing her story will bring families with PKU peace and joy as they navigate life with a this disease. As the High School Musical song goes: "We're all in this together!" Check out the video below to hear from Francesca herself!
1) Name:
Francesca
2) Age:
30
3) Where are you from?
Varese, Italy (Near Milan)
4) What is your tolerance? How much protein can you have?
I have mild Pku. My protein intake is about 20g of protein (1000 mg Phe)
5) What formula are you taking?
Since I lead a very active life and I train hard, I need different kinds of formulas in order to meet my metabolic needs. I take Afenil Micro 3h, Lophlex, Glytactin RTD Lite and Glytactin Build. In addition, I also take some supplements such as Vitamin B, Omega 3 and Calcium.
6) Are you on any extra treatment? Kuvan? Palynziq?
Diet is my only treatment. I'm not interested in other solutions such as Kuvan ora PegPal
7) What is your occupation?
I work as Shopping consultant for a Luxury Brand
8) What are your hobbies/interests?
My greatest passions are: literature (I have a bachelor and a master degree in Spanish, English and Postcolonial Literatures + Translation) and sports. I am a CrossFit competitor (or, at least, I try to :P).
9) What are your favourite Low Protein Foods, and your favourite regular foods?
My favourite Lowpro food is definitely Pasta. I love Pasta. My favourite regular foods are Pizza and french fries.
10) What has been the most challenging part of having PKU and how have you overcome it?
It is a very difficult question since I've always been really at ease with PKU. I consider it just a part of myself, a feature.
I can only remember a very recent episode in which I did not know how to manage the situation: last September I got my current occupation. The company organized an induction training for the new joiners, followed by a big party in one of the most well known restaurants in Milan. One week before the beginning of the training, I had to confirm my participation to the dinner. As you can easily imagine, I had to explain the situation (via Telephone) to a stranger who was in charge of the coordination. I did not want to hide my Pku, of course, there is nothing to be ashamed of, as I consider it just a different diet -such as a gluten free or a vegan one-. Of course, it was not easy to explain what I could or could not eat to a person who never heard about Pku (this happens a lot of times). The worst part, however, was the thought that this girl on the phone could go on google and look for this "Pku thing" and come across words like "mental development issues" and so on.
I know that this is completely nonsense, but I wanted the job so bad that I was afraid of their prejudice in front of what she (and al the bosses, eventually) could have found on the web.
It was the very first time in my life I had this kind of thoughts or worries.
It is usually very simple for me to speak about PKU, when I find myself in my comfort zone, mastering the situation while I explain face to face, especially if my interlocutor is a stranger, what PKU is and what it can or could entail. Also because of course, while people are looking at me, they can clearly find out that I am a pretty ordinary young woman.
People to whom I speak could not tell or imagine that I have something like a DISEASE.
All the issue was not about PKU itself, but about what people could figure in their mind without me there to explain what Pku is and to testify how I am not affected by it..
In the end, of course, everything went in the best possible way and every new person I met there (and with which I work now) treated my PKU in the most natural way, the very same way in which I deal with PKU. Some of them did not even notice I was eating different meals!
11) Do you have any words of encouragement for people who have PKU or for parents of people who have PKU?
The best words I can say for people with PKU and for their relatives are in the video.
For parents of little children I just want to say that, if they follow the pattern given by the experts, everything will be great. I would advise and beg them not to deprive their sons or daughters of some experiences (trips abroad, holidays...) just because of fear or excessive worries.
The most important thing is to make children responsible for themselves from the very beginning. They (both parents and children themselves) will soon discover how our PKU makes us resilient, sensitive and stubborn. We are just "ordinary" (it is important to show your son or daughter they are becoming "ordinary" adults while recalling the diagnosis day) people with something very special.
For my PKU Fellows: Treat your PKU as a super power. It has allowed (and still allows!) you to be the special, sensitive and strong person you are. It will always be part of you, you cannot change or deny it, so treat it in the most natural way and other people will automatically follow. Be responsible for yourself and clear in explaining what it is to other people. If you are relaxed about it, everyone will feel the same and will take care of you in the most genuine way.
And PLEASE sometimes just stop and think that, even if you believe that having PKU is the worst thing that has happened in your life, you have the greatest luck to know how to treat your disease. We can live a normal life "just" by following a special diet. It is not always easy, but it's worth it!!! Your health and your well being are the greatest blessings you have... preserve them and remember to shine!
Words of Wisdom from Francesca:
Please, remember that this is just my personal experience. What I wrote comes from my heritage, my family and how my parents brought me up. I'm not saying that having a disease is super cool! I just accept and embrace it. I know that often the way in which people face PKU depends on many factors, including the place of origin, the healthcare system, the family, the cultural background, the way in which we consider food and one's personal disposition. So, please, consider what you read as my personal point of view.
Check out Francesca's short interview with Mevalia as she talks about what it's like living with PKU!: