I am posting about my PKU Book project again for all those new fans and followers or simply for those of you who need reminders and more information.
As many of you already know , I am working on a project of putting together a book about PKU and PKU life. The idea behind the book is a collection of personal stories. There is no longer any deadline. I am keeping submissions open until I have collected enough to fill the book for publishing. I am in need of many many more submissions. I am making it my goal to collect 100 different personal PKU stories.
If you have ever read the book series “Chicken Noodle Soup For The Soul” this book would be very similar. I want it to be able to speak to anyone who picks it up. That whoever reads it, can relate to it. That the words on the pages reach somebody personally. No matter where you are in your PKU journey, that you can take away from this book.
I have broken the book down in to different chapters and am looking for submissions to fill each category. Submissions should be roughly 4000 words. Can be less, can be more. I have a title for the book but am reluctant to share as a lot of ideas of mine have been taken from the idea before I have been able to make them into reality.
What I am looking for in each submission , is personal stories, Details, emotions, thoughts and feelings. Tell me your story as If I don’t know what its like. Don’t worry about explaining PKU or MPKU I will be doing that at the end of the book. Talk about your challenges, how you over came them, your successes, your thoughts and feelings, your triumphs, what you learnt from your PKU life, or your child’s life, who supports you, what your clinic is like, what influence’s you, your PKU and your diet. What your goals, hopes and dreams are. Every Chapter is different so please message me if you need help . I am here to support you along the way.
If you are interested in working on this project with me, please review the categories below and message me to let me know what one you would like to write for.
The categories are as follows:
Introduction:
What is PKU? -Written by Amanda Cosburn
Chapter 1 :
New Born Diagnosis & Infants to age 5.
Chapter 2 :
The Early years : Elementary school age
Chapter 3:
Teen years. Age 13-18. Transitioning clinics, managing your own diet. High school with PKU
Chapter 4:
College & university years : post secondary school experiences
Chapter 5:
Adult life , living & working with PKU. Relationships and every day life, struggles and accomplishments
Chapter 6:
Pioneers of PKU : older adults living with PKU, been taken off diet as a child. Age 35 and older
Chapter 7:
MPKU personal stories
Chapter 8:
Travelling with PKU
Chapter 9:
Family members perspective ( spouse)
Chapter 10 :
Kuvan/ peg pal / LNAAS treatment
Chapter 11:
Medical professionals who treat PKU
* how they first became interested in PKU
* why they treat pku
* treatments and changes over the years
* personal stories
* personal experiences
* the evolution of PKU though out their careers
* thoughts and feelings
Chapter 12:
Non Profit PKU charities
Chapter 13:
Low protein PKU food and formula company workers.
Chapter 14 :
Amanda Cosburn – A Short Bibliography
Thank you for your interest and I hope to hear from many more people willing to participate. This project means a lot to me and I really hope it will be a success!
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I will post it on french group if you are agrea!
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Please! Id love for you and anyone to share it around and get the word out! Id love to see it shared all over social media.
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I would absolutely love to contribute. My 3 year old son is the only child we know of in our family with PKU. I have a 16 yr old and a 20 yr old without PKU from a previous marriage.
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Id love to have you contribute. I look forward to it. Feel free to message me for anything to help you along the way.
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Good for you with this great project!! I will pray for your success. Keep us posted. And…good for you for keeping the ‘wraps’ on some of your information–you’ve put a lot into this, do what you need to do to get it done!!!
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Thank you!
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Hi Amanda! This sounds great. I am a 24 year old living with classical PKU and never have been off-diet. I’d love to contribute to Chapter 4 – University years and maybe Chapter 5 – Adult life (with an emphasis on dating with PKU).
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That would be fantastic! Thank you so much. I do not have any submissions currently for Chapter 4 so that would be fantastic! and chapter 5 to would be great!
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Hi Amanda, I would also love to share my story. I have a 3 yr old girl with PKU and a 7yr who doesn’t. We have a great Clinic and a lot of support which we are so gratefull for. I look forward to seeing your end result.
Kate
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I am very interested in having you share your story with us. Please feel free to email me for more details .
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