Discussing PKU’s newest treatment with Soheb
Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.
As I’m sure a lot of you have seen, the newest treatment, for PKU patients, is finally now available on the NHS for both children and adults living with PKU. It’s the outcome we have been waiting over a decade for and it means that 2022 is an exciting year for us all!
To test my responsiveness to the treatment, I jumped on a train to my clinic at St Thomas’ Hospital in London. It was strange to be back there as I realised, I haven’t been to my usual appointments in over 3 years due to the pandemic! It didn’t take long as the tests were just having blood taken (a procedure we are all too familiar with!) with the blood then getting shipped off to the testing clinic in Bristol. It wasn’t all business though as after I was done, I met up with my friend for a catch up and Starbucks (having my favourite almond milk Mocha of course!) to make the most of the journey to London.
I think like a lot of people, while waiting to be tested, I was wondering that if this new treatment isn’t going to work with everyone, what’s been the point of spending so long trying for it to be on the NHS? The reason is that there are many other amazing treatments for PKU happening across the world, that need to also go through the NHS approval system. This new treatment is the perfect foot in the door for the rest to be able to go through the system a little quicker!
I know we are all nervous but excited to trial this treatment, so to get an idea of what other people were thinking, in my interview with my friend Soheb, I asked him for his thoughts on the new treatment. 
What is your opinion on the newest treatment now being available on the NHS?
It is both exciting it’s finally here yet also incredibly disappointing it took such a long time. I was told about this while I was in university and having it at that time would’ve done wonders for my independence – or at least given me a bit more freedom. I’m also aware that it doesn’t work on everyone and that it’s quite likely it won’t work on me as someone with low exchanges. Talking about tablets and pills, that news has been a bit of a bitter pill to swallow.
Will you be trialling it and if so, how do you feel about trialling it?
I have indeed signed up to trial for it. I’m feeling a bit nervous and anxious about it – it’s already taken so long to get it and I don’t want to have waited over 11 years just to be told that it doesn’t work for me. But I must hold out to hope and give it a shot, and hope that there are better advancements in the future.
Finally, what message of support or word of advice, regarding PKU would you give your younger self, if you could meet them now?
As a young person with PKU, I had no idea how to count exchanges and how to cook. As someone who really got to grips with it in his thirties, I wish I made more of an effort to learn how to count exchanges earlier. The only reason why I didn’t was because I was afraid to be vulnerable and show my ignorance, especially about my diet. I’d also tell my younger self that it’s okay to not have all the answers, just make the best with the answers you have right now but do try to make an effort and know more about the PKU diet so you can move forward and live your best life. Life off the PKU diet isn’t the best experience for PKU people so the more you can get on with the diet and get adjusted, the better.
Thanks so much to Soheb for taking part in our interview!
The best thing about having PKU is how it really does bring people together and through that, realising we are not alone in our thoughts and feelings towards diet and life. We are all just trying to do our best with it, and no one is perfect. I feel so lucky to be born in the age when I can have PKU, live a full functioning life and have social media to be able to talk to and meet amazing people like Soheb, whether it’s moaning about our diet, chatting about video games, or sharing food ideas, I am not alone!
Another exciting thing to realise is that new things are coming out all the time for those with PKU to improve our quality of life, products like the PKU EASY tablets, which makes taking substitutes, a big responsibility and strain on our life, so much easier and the new treatments that are coming that could mean life becomes a little bit more normal for those with PKU.
Don’t forget to contact your dietician to see if you can be tested for responsiveness to the treatment and you can also ask for a sample of the PKU EASY Microtabs to see if they would be a better fit for your diet!
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