PKU Spotlight: Mariah
I'm so excited to share another PKU Spotlight segment with you! Today I'll be interviewing my friend Mariah! We met at PKU Day in Vancouver and had no idea that we had been living in the same city and had never met!
There are A LOT of similarities between my PKU story and Mariah's story from tolerance levels, to formula brands and everything in between! If you know me, you'll see the similarities in her answers right away!
She just recently got back from travelling and I thought it would be interesting for all of you to hear from someone who went abroad during a pandemic with PKU! Check it out below:
What’s your name? Mariah Collins
How old are you? 24
Where are you from? My family all lives in Vancouver now, but we lived in Washington state until I was 15
What’s your tolerance? Somewhere around 6 grams of protein/day
What formula are you on? Pku sphere and phenyl free 2hp
Are you taking anything else to help with your PKU? Kuvan? Not currently
Hobbies/interests? Photography and reading, and in the past couple of years have taken up surfing and skateboarding. In non pandemic times, I play field hockey as well.
Favourite food (regular and low protein)? Regular: it’s a toss up between sushi and Greek potatoes
Low protein: dietary specialties imitation Mac & cheese
Tell me about your trip! Why did you decide to go? I’ve always been interested in the idea of going on a long term trip, but the timing never seemed right. I had initially thought I might take a gap year after university but was lucky enough to find a job in my field before I even graduated, so planning a big adventure kind of got pushed to the side, and I opted for a 4 week backpacking trip around Europe right after graduation instead. Fast forward 2 years and I was starting to feel burnt out at work and wasn’t sure if I was on the right career path anymore- just generally, I kind of felt like I needed to make a change. I had a couple of friends that were at similar crossroads as me, either just finishing uni or feeling like they wanted to change things up, so we decided as a group that we wanted to move to New Zealand together for 6-12 months to do a working holiday. I had always wanted to go to Australia, so I planned to do a 5 week solo backpacking trip before meeting my friends in New Zealand. I started thinking about going in April of 2019, booked my flight in December, quit my job the first week of January 2020 and was on a plane to Australia the first week of February. I backpacked through Australia no problem. On my last day there, things started getting serious with the pandemic and New Zealand instituted a mandatory 14 day quarantine to all new arrivals. I got to Auckland and went into self isolation about 3 days before they shut the borders entirely. One of the friends I was meant to travel with made it into the country and one did not unfortunately.
Did you have any hesitations about going when it comes to PKU? Yes, totally. I was worried about finding low protein food and how I would get enough formula to last the full time I was gone. I’m also really self conscious about it looking like I don’t know how to pack lightly when I inevitably need an extra bag for low protein things, so it took some time to come to terms with the reality of needing at least 6 months worth of supplies, in addition to clothes to get me through all four seasons.
How did you bring your formula with you? For the duration of my trip I switched my prescription over to all sphere—I’ve been doing 2 sphere and 50g of phenyl free 2hp for a few years because I love phenyl free 2 hp and can’t let it go haha, but taking only sphere with me made it easier because it comes in pouches that are more pack-able. Before officially landing in New Zealand I had this 5 week backpacking trip in Australia planned, so I packed 5 weeks worth of formula into a carry on that I took with me on the backpacking trip. I brought another 3 months worth of formula with me from home in a suitcase, which I left with a family friend who lived in Brisbane and picked up before flying to New Zealand. I was worried about the logistics of bringing all of it through customs into Australia at once, so the Vancouver clinic helped me arrange to have another 3 months worth of sphere shipped from a distribution centre in New South Wales to a friend of mine who lived just outside Sydney. After I picked that up from her and went to Brisbane to get the rest of the formula, I had 2 suitcases totally stuffed with sphere and was officially living my worst overpacking nightmare (lol).
Were there any unforeseen roadblocks that came up regarding your PKU? Covid-19 definitely threw a bit of a wrench in my plans in terms of diet management. I was so focused on making sure I had enough formula that I hadn’t thought about how much food I would need and it became clear once I got to New Zealand that I hadn’t brought enough. I also had been expecting that my mom would be coming to visit part way through and would be able to bring me things like pasta and baking mix. I ended up reaching out to someone from Australia with pku for advice on distributors that sent low pro food to Australia and New Zealand, and also reached out to the New Zealand clinic to see if they had any ideas and was able to find a company that shipped low pro pasta and other basics to New Zealand. Another thing was that I had been expecting I would be able to do blood dots while I was gone, but because of the lockdown, couldn’t get stamps to mail them for the first 3 months I was away. When I finally did manage to do one and get a stamp, it took over a month for it to arrive in Vancouver, so at that point I just gave up on them all together. I’m lucky in that I’ve had pretty consistent levels for most of my life, so this wasn’t as bad as it could have been as I got permission from the clinic to not send levels in while I was away, but it definitely wasn’t ideal.
Was there anything that surprised you about that trip? With things not totally going according to plan because of covid, a lot of my travel involved blindly putting faith in friends, acquaintances or friends of acquaintances to receive or store food and formula for me. Maybe I shouldn’t be, but I was surprised by how willing people were to help me, be that a friend of a friend (that I had never met before) grocery shopping for me over FaceTime and reading nutrition labels to me while we were in self isolation, or host families letting me leave some of my formula at their house while I visited other parts of the country. I also am always surprised (and super excited) to see what types of vegan/gluten free/naturally low protein foods there are in the grocery stores in new places. New Zealand some of the best vegan yogurt and cheese I’ve ever tasted, and most of it was 0g protein!
Were you nervous? I was SO NERVOUS that something would go wrong. I think my biggest worry was that I was going to get to New Zealand and for some reason customs wouldn’t let me bring all my formula into the country and I’d be stranded with nothing. Evidently that was not the biggest thing I needed to worry about since the world literally shut down while I was trying to travel.
What would you say to someone with PKU that wanted to travel but was hesitant? Just do it!! It’s so much fun to be able to explore a new place and see all the different types of food a new area has to offer. I think that sometimes if you think about it for too long, you can come up with a million reasons why it couldn’t work or why you shouldn’t go, but the fact is, if you can talk yourself into it, there is no part of managing your diet on the actual trip that you can’t handle. Travel doesn’t have to mean you go on a 6 month adventure to the other side of the world, it could be something a simple as starting with weeks or weekends away more close to home- just start flexing those organizational muscles and figuring out what it means to pack the things you need for the amount of time you’re going for. I promise you’ll be glad you did it.
Do you have any advice for someone travelling with PKU? Always pack more food and formula than you think you need. You never know if something is going to go wrong that will hold you up for longer than expected. Along the same vein, stock up on the super easy, packable low protein items like cambrooke instant noodles or other things that you just have to add hot water to before you go. They’re a great thing to be able to pull out if you arrive somewhere after a long travel day and want something that is guaranteed to be low protein. Another thing is to make sure you have formula packed in multiple bags. I try to pack at least a weeks worth of it in my carry on if I’m checking the rest, because if your baggage gets lost you want to have time to figure out a game plan. If you can fit it all in your carry on put it all in there and then you don’t have to worry. Something worth noting is that if you have a medical note, you can pretty much always get away with having an additional carry on for your food and formula, or a cooler if things you travel with need to stay cold. I’ve travelled budget airlines like Ryanair in Europe and tiger air in Australia which typically are sticklers for not letting you have more baggage than their regulations state, but they have to let it slide if you have the note. If you’re planning a big trip, start getting organized early. The logistics of making sure you have enough resources can be complicated- the first time I brought my trip up to my dieticians was in October, and details on how I was going to transport all of my formula weren’t truly finalized until a couple weeks before I left in February! The last thing I’ll say, is don’t be afraid to advocate for yourself. There might be times when it feels like people don’t care to help you out, but it often comes down to them not understanding what it is that you need. Your diet is not just something you can ignore for four days if an excursion host messes up and doesn’t provide the right food to keep you fed. Explain this to them and tell them how they can help and 9 times out of 10 they’ll be willing to accommodate your needs.