Hello my name is Katherine Ramsay and I am a 27 year old adult living with PKU. I am going to share my experiences of growing up with PKU.
Growing up in a small town, I was the only person with PKU. The only time I would encounter people with PKU would be at social events arranged by the hospital. These would be national and regional events bringing people with PKU from around Scotland together. My metabolic team at Ninewells hospital were always very devoted in creating a supportive PKU community. I always valued these events and was so excited to meet others and share experiences. I always appreciated these occasions as for a day I felt accepted and normal. Although these events were a great comfort to me, I did not have a PKU companion to share my struggles and triumphs. As PKU is very rare it presents many complications with society’s understanding and acceptance of it. This can be so frustrating at times and can make you feel so isolated and alone.
I feel that in recent years the PKU online community has really grown and forms a supportive bridge between big conferences and events and everyday life. You just have to log in to your computer or smart phone and instantly you have a team of supporters on your side lifting you up.
There are many great social media platforms that I use for support: Facebook, Instagram, the NSPKU website and Vitaflo’s VitafriendsPKU website and social media accounts.
I regularly use the PKU (Phenylketonuria) UK & Ireland Facebook page. This is a safe space to get emotional support, share knowledge, have a rant, make each other laugh and most importantly to care for one another. I use this for quick recipe ideas, finding new foods in supermarkets and using the search bar at the top of the page to look up topics and advice on protein content of certain foods. I really think this is a great holistic place for all affected by PKU.
https://www.facebook.com/groups/PKUUKIreland/
I also use the PKU (Phenylketonuria) worldwide support group Facebook page. This allows me to reach people from all over the world. It is always interesting to find out the conditions and treatment of PKU in other countries. This is a great place to display PKU awareness to the world and lobby support for better care of individuals with PKU. On this page I can read about current research and developing protein substitutes and medicines that can help manage PKU better. I enjoy following people’s PKU journeys on new drug trials in the hope that these drugs will be a success and become available in the UK.
https://www.facebook.com/groups/PKUworldwidesupport/
I enjoy using this platform to find new and exciting recipes to try. There is a great international PKU blog presence on Instagram that is very helpful. To find recipes I search hashtags:
#Pkufood
#Pkudiet
#Pkudinner
#Pkulunch
#pkurecipes
1) National Society of Phenylketonuria (NSPKU)
This is the go-to page for everything PKU in the UK and Ireland for news, research, recipes, events, dietary information and many useful links. I tend to screen-shot the guidance publications for exchanges, so they are always on my phone when I am out and about.
2) Vitaflo VitafriendsPKU
Vitaflo have a support website and social media platforms, such as:
https://www.vitafriendspku.com/en/
https://www.facebook.com/VitafriendsPKU.uk/
Both the Vitaflo Facebook page and website, I feel have great sharing support, from great recipes by professional chefs and blogs that reveal people’s PKU journeys (like this one!).
The VitafriendsPKU Facebook messenger help desk is very attentive. One time I had problems with prescriptions at my local pharmacy and they were quick to fix the problem. I have used the help desk for other enquires such as to organise the delivery of protein substitutes for international for holidays.
I am a member of the online community and divulge my world of my PKU through my Facebook and Instagram pages:
https://www.facebook.com/pages/category/Interest/Kates-Fab-Food-for-PKU-397695287383421/
https://www.instagram.com/katesfabfoodforpku/
My pages are a space to share the love of food for those of us who are on a PKU low protein diet. They are aimed more at PKU adults, to help with different ideas for healthy recipes and eating out. I struggled a lot with maintaining a healthy weight. Over the past 4 year I have returned to a more controlled diet and feel healthy, my well-being has improved and I have now achieved a healthy BMI (body mass index). My goal is to help others feel good about themselves as well. The meals that I post are low protein and delicious. Everyday life is hard with trying to stay on diet, so I hope this page will inspire others and help them with that!
I feel very fortunate to be a part of the online community and have gained so much help from so many amazing people. I feel overwhelmed by the achievement of my page and that I have had the opportunity to speak with people from around the world about PKU. Helping people plan meals, encourage them to stay on diet and make lots of new friends.
One of my followers private messaged saying: “Really inspiring for young PKU’ers to read” I was very touched by this. Reflecting on my own childhood of PKU, I struggled with the ups and downs on my own, social media really is a helpful tool in the drive for support and acceptance of PKU.
Please message me anytime. I am happy to share experiences.
Always remember life is for living - enjoy what you eat and don’t let PKU get in your way.
It’s said that an average of one in ten thousand babies are born with the rare genetic condition, phenylketonuria (PKU). That’s the equivalent of just nine people in a full capacity Wembley crowd. Yet, despite extreme rarity, and against huge odds, my newly wedded wife, Nichola, and I - both diagnosed at birth - recently celebrated an ‘all PKU’ marriage. Now, with our big day existing only in our memories, these are our tips for organising a PKU wedding:
