Suddenly we are several weeks into 2020 and the blog has been neglected. I have avoided another post as, just after the last update, the PKU social media community discussed the need to focus on how difficult it is to stick to the PKU diet.
There was talk of the need to ensure that one person talking about doing well on the diet doesn’t discourage others who might be struggling with their treatment. Yes, this is a valid concern and one I have been reflecting on for the last month or so. It is the reason I hadn't updated the blog.
PKU ain't a walk in the park!
I have pretty much always been on diet so cannot write about the struggles of returning to it and the need to wean myself off ‘forbidden foods.’ The clinics tell me that I'm one of the few who have managed to keep my Phe levels within target range (bar a few holidays) for decades now. So, as an outlier, should I be writing about PKU at all?
I have never said that the PKU diet is easy but I do try to avoid negative thinking. It is not easy to be positive about having an inherited metabolic disorder, but I do try. Of course I don't leap out of bed in the morning and shout “Hurray! I have PKU!” Like many of us trying to stay on diet, I have spent hours trying to arrange a holiday or stomped angrily from supermarket to supermarket just trying to find a decent lunch.
Campaign for new treatments
We all deserve access to better foods, medicines and treatments. And we need to be aware that just as the diet therapy doesn't work for everyone, Kuvan, Peg-PAL and other new PKU treatments will not work for everyone. Also, the long term consequences of these therapies are unknown. This means there needs to be more scientific trials, both of treatments currently on the market and of those in development.
Sadly, as someone who has worked to maintain Phe levels below the EU guidelines for years1, I have not been eligible for any of these trials. Even if I lived in the EU, I would not be eligible for Peg-PAL2 unless I allowed my Phe levels to rise and kept them there for a long period of time.
Essentially, I need to risk brain damage in order to be considered for one of the non-diet therapy trials. I have to admit that this annoys me, it just seems unfair. And I do play the game in restaurants sometimes, ‘What would I order right now if I was on one of the new therapies?!’
Two years ago, I wrote about this struggle for the NSPKU as part of their ‘My Story’ requests 3. I don’t believe this has been published yet, and do let me know if I missed it, but it is relevant so I have shared an extract below:
“PKU means managing your food all day, every day. Always working out how to get in your supplements while finding the ‘Goldilocks Protein Zone’ - not too much Phe, not too little. When you add in the need to order PKU food monthly and manage your stocks it’s not surprising that food can become a huge preoccupation.
As if things weren’t bad enough, we live in a society where food is seen alternately as a weapon or a medicine, a panacea or the cause of all illness. You need only glance at newspaper headlines to see how much judgement is cast on ordinary diets. Food can be classed as ‘healthy’, ‘un-healthy’, ‘processed’, ‘non-processed’, ‘natural’, ‘junk’, ‘superfood’, ‘full of empty calories’…
Anything can trigger it, but Diet Anxiety usually shows up when I go outside my usual routine. New events need a plan and I won’t be relaxed about them until I’ve found a few safe meals and mentally packed my supplement. I’m guessing I’m not alone in being a grown PKU adult who still worries about where their next meal is coming from.
Diet Anxiety used to come more often and affect me deeply. I would be in a flood of tears and rage about how damned unfair it was that no-one else needs to check out local menus before clicking ‘buy-now’ on a train ticket. In the midst of one of these episodes I realised they were the same feelings I’d had a year before, triggered by similar ‘holiday-shopping’. At that point it seemed useless to keep raging. Ultimately the wailing didn’t change anything and just wore me out.”
When life gives you lemons...
That is when I decided to be as positive as possible about PKU. The blog grew out of that, somewhere to share useful recipes or meal tips.
I realise that not everything I write will help everyone, that would be impossible. But I will offer encouragement and share what I’ve learned. At the same time, I can join the NSPKU campaigns for new treatments in the hope that they might become available.
I hope our online community has room for sharing both raw struggle and well meant positivity.
Write to your MP
P.s. please consider writing to your MP about the fight for new treatments. The NSPKU offer a template letter and guidance on their website: http://www.nspku.org/news/story/write-your-mp