Living with PKU: a low protein life with Phenylketonuria launched in paperback and e-book one year ago today! This project would not have come about without the help of some generous people who donated their time and feedback: my writing teacher, the NSPKU dietician, and Soheb (another adult with PKU). Thank you all.
Hitting Bestseller lists
On the big launch day last year, I got Covid-19. This meant I was unable to do the planned promotion for the book. But the PKU community stepped up, and Living with PKU hit NUMBER 1 in the Genetics hottest releases list. It also made the top 6 bestsellers list, up there with Richard Dawkins and Adam Rutherford.
Then the reviews started rolling in, with 5 stars across the board and recommendations, like “This would be an excellent book for anyone with PKU, their friends and family, and importantly, clinicians treating those with PKU. Knowing what the lived experience is of PKU is essential to providing better care and this should be read by GPs, dieticians, and consultants alike. Highly recommend!”
“This would be an excellent book for anyone with PKU, their friends and family, and importantly, clinicians treating those with PKU. Knowing what the lived experience is of PKU is essential to providing better care and this should be read by GPs, dieticians, and consultants alike. Highly recommend!”
Out of the blue, the book was picked up by a journalist who writes on issues of food allergy and intolerance. He was keen to write about PKU for PKU day, and picked up a copy to help. This gave me a moment of deep satisfaction when a professional journalist and writer described Living with PKU as: “Well-written, as well as wise, and never once does it run out of steam or become dull to a non-knowledgeable reader.”
“Well-written, as well as wise, and never once does it run out of steam or become dull to a non-knowledgeable reader.”
A cheeky gin or two was imbibed to toast that success. But, more important, has been the individual stories from people who have contacted me about the difference the book has made for them. It was the reason I sat down to write in the first place, and am so glad it has helped.
In the year since launch there have been 115 copies sold, more than in the first two years of my first, traditionally published, book on brain injury. The bulk of those sales have been in paperback, rather than by e-book, which is interesting. My guess is that it is easier to share a paperback among the family.
Most copies have sold in the UK, which is expected, but the readership is wonderfully global:
Thank you to everyone who has bought a copy. If you enjoyed it, then please leave a review, so others can find the book. If you didn’t enjoy it, or have feedback, then please tell me.
There are plenty of people with PKU who do not speak English and I hope to work on translations, once finances allow. Meanwhile, there are a few markets which a good number of English speakers where the book hasn’t reached as yet.
If any readers are in Ireland, Sweden, or the Netherlands and might have suggestions for how to get the book into hands and libraries in those countries then please let me know.
Thank you again to the wonderful PKU community!
50% of profits from Living with PKU to the NSPKU
The NSPKU is celebrating its Golden Anniversary this year, as the patient organisation formed 50 years ago. They are running a fundraising campaign, which I’m supporting by donating 50% of profits from copies of Living with PKU sold in June & July to the NSPKU. Please join in to celebrate and support the work of this valuable charity.
How can you help?
- If you have been wavering over a buying Living with PKU, then now is a great time to buy a copy and join the fundraising effort!
- If you already have a copy, please leave a review to help others find the book
- Please share this news far & wide to anyone who might benefit from this valuable resource for PKU and support the NSPKU.