Interview with an alien

What does growing up with GLUT1 mean to you?

Growing up with GLUT1 is like daily walking on a tightrope. You have to follow the diet at the best of your ability as you are walking on a rope. Have you watched the movie “The walk”? How exciting is to walk across skyscrapers, isn´it? Well, nice… (maybe not everyday though). Anyhow, if you hesitate or if you want to walk as other people do, or if you want to eat the food as other people do, then you fall off.

How do you balance the ketogenic diet with your life as a teenager? Are there any particularly challenging situations?

I balance my diet pretty well with my life as a teenager, yet there are a few challenging situations. For example, like all teenagers, I like to be and go out with my friends. Yet, when I go to the cinema with my friends and we order snacks, they order sweet popcorn, while I order nothing at all (I generally have the things my mother has prepared for me or I grab some keto snacks). Another challenging situation is that in the summer, all my friends like to go out together for ice cream, while the maximum thing I can order is whipped cream. And while it’s good, it’s also quite bland, a perfect reflection of how I’m feeling. I balance it by not eating the things everybody else does, yet still having the opportunity to go out with friends, have fun, and enjoy life.

From what I’ve heard, the time of and relationship with the diagnosis is different for everyone. How long have you been following the ketogenic diet? What is your relationship with diet?

I’ve followed the ketogenic diet since I was 1 year old. When I was a child, it didn’t weigh on me as much, as it didn’t have that much of an impact. Growing up, however, I started thinking about it more. I started thinking about all the things I couldn’t do but others can. I started feeling more envious, more bitter. And, most of all, I hated the fact that others had freedom to choose whatever and whenever they wanted to eat, but I couldn’t. It just seemed terribly unfair, unjust. Yet it made me more comfortable in saying “no” when offered something, although I desperately wanted that ice cream!

But that´s also some positive notes. Keto helps me to appreciate more who loves me for who I am. I enjoy to visit friends that prepare special meals just for me. They show they care and it means a lot!

Have you ever thought about abandoning the ketogenic diet? If so, what inspired you to do it? If not, what motivates you to continue?

Yes, for sure I have thought about abandoning the diet. Why? Simply put, I was tired. Sick and tired. Sick and tired of seeing my friends eat whatever they want whenever they want while I can’t. Sick and tired of not being able to run or hike or even walk long distances in extreme temperatures with low stamina. Why did I not quit then? I tell you a long story short. When I was 5 years old, my family moved to Germany. Life with GLUT1 was tough for all, we all needed a break and a change. In Germany my compliance to the diet was much better, food here is just food and much less “social”. Since that time, I have been attending an international school which is a melting pot of different nationality and cultures. Diversity is normal. We say: diversity rocks! I can now speak 5 languages (a bit of Japanese as well 😊), I am very shy but I acted as main character during a school play and I am in the debating team of the school. I realized that if it weren’t for GLUT1 and for the diet, we wouldn’t have changed our life, stayed in Germany and enjoy all these great opportunities that I have. Would I really want to give all that up in the pursuit of being “normal”? Anyway, what even is normal? Diversity is normal.

How did joining a GLUT1 patient association help you? Did you receive support and help from other members?

One year ago, I went to the GLUT1 conference in Milan, and that was an experience I will never forget anytime soon. Entering a room with people who were just like me made me feel, for probably one of the very few times in my life, a sense of belonging. That I wasn’t alone. And, I know I probably shouldn’t be saying this, but it also made me feel thankful. While I was there, I met some people who were diagnosed way later than I was. So I felt thankful to the scientists who spent countless hours researching about GLUT1, making more knowledge available than there was 30 years ago. Thankful to the GLUT1 association who spent their free time fundraising for research projects, hoping that someday, a cure can be found. Thankful to my family for caring so hard and so close. It’s thanks to the study, resilience and dedication of these people that I can enjoy every single day of my life. On a tightrope, but still enjoy.

What are your hopes and goals for the future?

In the future, I hope to become an author, or maybe a journalist, and I really hope that someday, doctors will find a permanent cure for GLUT1. And even if they don’t, I hope that I’ll live long enough to see it not become such a burden anymore. I hope to see people be more aware about it. And for them to realize that having GLUT1, or any disease for that matter, isn’t the announcement that the alien apocalypse is going to start. And I hope that I’ll treasure the opportunities I have and, by being a journalist, I can be of inspiration to others. Building up your life is hard, but I want to show that if I can do it, so can anyone else.

I’m sure the next question will interest many Kalarians: What advice would you give to someone who has decided to start following a ketogenic diet for medical reasons? What do you think is important to know and consider before making this choice?

As I said before, everything has to be perfectly measured and weighed. So first, arm yourself with patience. And LOTS of it. Secondly, it can be hard at first, but once you get used to it, following it becomes almost automatic, partly because you have no other alternative in the foreseeable future, mostly because, even though it seems like a prison sentence (I’ve been there, believe me), it will allow you to achieve new heights you hadn’t even thought you could.

Finally, just don’t give up. Because as Frida Kahlo, a famous painter, once said: “Feet, what do I need you for when I have wings to fly?” You can say “Normality, how do you serve me when my life wouldn’t be half as good with you?”

Zix (wow). Simply zix. Thank you for your awe inspiring story. I’m sure we can all learn something from it. Thank you so much for coming.

Thank you for having me here. It was a pleasure.

Goodbye

Goodbye

That was it, ladies and gentlemen. Thank you for tuning in. Kitaik Edolaorn signing off!