Your PKU diary,
all in one place
MyPKU helps people living with Phenylketonuria, and the families who look after them, keep a diary of blood phenylalanine levels and daily exchanges, look up food information, and connect with others who understand. It sits alongside your metabolic team's care and does not replace it.
What is PKU?
Phenylketonuria (PKU) is an inherited metabolic disorder that prevents the body from breaking down phenylalanine, an amino acid found in all foods that contain protein and in the sweetener aspartame. Without careful management, high phenylalanine levels can cause serious neurological harm.
Most people with PKU follow a low-protein diet with a prescribed protein substitute, check their blood Phe regularly with home blood spots, and stay in touch with their metabolic team throughout life. MyPKU is a diary and reference tool to sit alongside that care.
Everything you need to manage PKU
Designed by someone who lives with PKU. Every feature exists because someone needed it.
Blood Level Tracking
Log every blood test result in seconds. See your results on a chart, with the range you entered shown as a reference line.
- Results in µmol/L (UK) or mg/dL (US), stored in µmol/L
- Export data as CSV
- Note illness and other context, then filter your history
Exchange Tracker
Log exchanges as you eat and see how today compares with the daily allowance your clinic gave you, with a chart of the days behind it.
- Log a half or a whole exchange in a tap
- Your last 2 days free, full history with Premium
- Log straight from a food result
PKU Community
Share experiences, ask questions, and offer support in a safe, moderated space built for the PKU community.
- Share posts and join the conversation
- Photos checked before they appear
- Anyone can report a post
Family Accounts
Keep a diary for a child you look after alongside your own, and share it with the other people who help.
- Switch between people in one tap
- Invite a carer, or a viewer who can only read
- Hand the record over when they turn 16
Food Search
Scan a barcode or search by name to see protein, exchanges and an estimated phenylalanine figure, and whether a food is usually exchange-free under UK rules.
- Protein, exchanges and estimated Phe per 100g
- Aspartame (E951) flagged
- Name search across millions of foods
PKU Shop
Browse PKU books and resources, including the much-loved Rosey Raccoon series.
- PKU children's books
- Written from lived experience
- Some titles sold through trusted retailers
Keep your phenylalanine results in one place
Every blood test result is plotted on a chart, building a record of your levels over time. Add a result in seconds: date, sample type, value in µmol/L or mg/dL, and notes, including context such as illness that can affect a result.
Filter and search your history, and download it as a spreadsheet to take to your next clinic appointment.
Start Tracking Today
Your daily exchanges, as you go
Tap to log a half or a whole exchange as you eat, or log a food straight from its search result. Today's total sits next to the daily allowance your clinic gave you.
A chart shows the days behind it. Your last 2 days are free; Premium keeps your full history.
Start Your DiaryLook up protein and Phe for foods
Look up protein for millions of products, with exchanges and an estimated Phe figure worked out the way UK clinics do. MyPKU also shows when a food is usually exchange-free, and flags aspartame. Always check the pack.
The free plan includes 3 barcode and 3 name searches a day; Premium removes the daily limit.
Try the Food Search
One account for the whole family
Parents and guardians can keep a diary for each child they look after, next to their own. Invite a partner or grandparent as a carer who can add entries, or as a viewer who can only read. When your child turns 16, they can take their record over with their own account.
Your data is encrypted, never sold, and yours to download or delete at any time.
Create Your AccountA feed for the PKU community
Share an update, ask a question, or read what others in the community are talking about. The community is for people aged 13 and over living with PKU and their families, and it is moderated: photos are checked before they appear, and anyone can report a post.
Premium supporters get a visible badge next to their name as a small thank-you for keeping MyPKU running.
Join the Conversation
“MyPKU was created because managing PKU deserved a better tool... one designed from lived experience, not just clinical assumptions.”
Danielle Freeman
Founder · Author of “Rosey Raccoon Has PKU”