When we think about new advances in medicine we usually think about going forward. However, as we make medical changes that can significantly change our lives, it may mean that you are going backwards in other areas. I am here to talk about an aspect of Palynziq and potentially other future PKU treatments or cures that no one made me aware of. And how could they? We are so early in the Palynziq journey, my home country does not even have full access to it yet. But I am ready to talk about it.
When I was younger, my tolerance was between 3-5grams of protein a day. I would have a hard time finding something to eat at birthday parties, family dinners, field trips, and other social outings. You would think that being able to eat more protein would alleviate that social tension and hardship. I thought so too, but now that I am able to try more things, there is a new set of complications that I am starting to navigate.
For example, I am having to re-explain my PKU to people. Those who have known me and who are aware of my PKU don't understand where I'm at anymore. "Wait, so you can have meat now? Why aren't you eating I thought you could eat more protein now? But if you can have dairy now why don't you just eat it? Your levels are so low you should just add more protein and not wait for the doctors to tell you if you know you have good levels. I made you this high protein dinner, I thought you could eat whatever you want now."
OKAY. Obviously I didn't see any of this coming. People see me trying bites of chicken on social media so they assume I can eat it or that I will like it because they do and most people do. I've been explaining it like this:
Imagine you post on social media that you tried frog legs. It was okay but definitely something you would have to get used to, but are still kind of weirded out by. Then, a friend invites you over for dinner and you arrive hungry and ready for a meal, and all they have prepared for you is frog legs. You're confused and they say "Well I saw on instagram that you tried frog legs so I thought you would be okay with eating it for dinner." NO. Maybe one day I'll get to a point where I can incorporate frog legs into my diet a little more, but for right now, and probably still for quite some time, if I want to eat a meal to fill up on, it is going to be with something that I'm familiar with, not something I have just tried, like frog legs.
Frog legs = High protein items
When doctors say, you'll be able to eat meat, that doesn't mean you will like meat. When your friends say, but I thought you can have eggs now, it might be true but it does not mean you will like eggs. These are flavours and textures you literally have never tried before. Just because you can eat things, doesn't mean you will. And that's okay. Just like trying anything new, our bodies need to get used to the new flavour. Maybe you'll like it right away, maybe it will take a few tries, or maybe you won't like it at all. I cannot tell you the mind battle that you go through when you're holding something on your fork that you have never tried before, and you're trying to put it in your mouth for the first time. It's like being told your whole life that fire is hot and you shouldn't touch it, and then almost 30 years later you're told you can touch it, and be safe. Have grace for yourself. And if you don't have PKU and you're reading this, be patient with us as we enter a whole new world we have never been in before. It can feel lonely and discouraging.
Another part of it is the lack of knowledge when it comes to food. I recently went to a PKU conference where one of the seminars was literally just teaching us what temperature you need to cook chicken to in order for it to be safe to eat. If I'm at a restaurant with you and the waiter asks me how I want my eggs, and I look at you and ask you what that means, please don't laugh at me. If a waiter asks me if I want my burger well-done or medium and I have no idea, have grace for me. Obviously I am not at this place yet, but I did have an experience where I was asked how I wanted my beans and my husband gently explained to me how there are different ways to serve beans, and although I did not eat them, I was so thankful that he was gentle and understanding to my question. But it also opened my eyes to the fact that I am going to have a lot of questions that a lot of people are going to think is second nature. Please, be gentle with us.
I think this is such an important blog post because we are getting closer and closer to more treatments and potentially a cure and people with PKU are going to have to go through this kind of transition that doctors don't tell you about, because it doesn't cross their mind! I think there needs to be mental health counselors that are available to people with rare diseases going through medical transitions, just as easily as we have access to dieticians.
Of course, this is my experience, and not everyone will feel this way, especially if you have PKU and have been off diet before. But if you are like me and have never been off diet and have been very strict with your PKU, then you may have a similar experience. Whatever stage you're at in your PKU journey, have grace for yourself, and laugh along the way. If you are a caregiver or friend of someone with PKU, please be understanding and patient as the changes come. Because they're coming, and it's exciting! But it's a whole new beast to tackle.
