Years ago , I wrote about my dream to put together a collection of short stories from the PKU Community.
I received replies from a few interested people. Id love to really get this going again if their is still interest. What I am looking for is a short story submission approx 3000 words or less.
My outline and “chapters ” are broken down into 10 categories and I need submissions for each. I will limit to the first 5 who respond to each. IF there are more id look at doing a series or a second book.
The 10 groups I am looking for are :
Section 1 : New Diagnosis
Examples are :
A mothers perspective,
A fathers perspective
The new pku parents
What life looks like with a PKU infant. The emotions, the education and training received. The challenges and the struggles. What has helped and how you coped /managed. As well as positive stories.
Section 2 : The Early years ( from a parents perspective)
Examples being : “firsts” first foods, first clinics, first tests, first teeth ext ect
a growing baby
toddler adventures- raising a toddler with PKU
starting kindergarten
the elementary years
Section 3 : The Teen years ( written by teenagers with PKU )
Taking the reins – taking over the diet from your parents.
How you manage the diet on day to day as well as socializing and eating out, parties, sporting events, field trips, camping, traveling etc.
cheating on your special diet and treatments.
managing the diet through things like :
middle school/ high school / Sports and team sports
work / going out with friends / relationships and dating.
Section 4 : The college years – (Written from pku patients who actually have PKU )
Post secondary education and dealing with diet, dorm life, campus living, cooking and preparing meals , meal planning around classes and projects or social outings ect ect. Did you share your PKU with your class mates . why or why not?
Section 5 : Adult life – ( ADULTS WITH PKU THEMSELVES!)
Managing life and the diet in day to date while juggling careers, working, cheating on your diet, dating, relationships, marriage, building your families, deciding to have children not not. Adopting? surrogacy? traveling, inspirational stories for other adults with PKU to let them know they are not alone. Perhaps something you struggled with as a Youth and how you over came in. Did you use ot have high levels? how did you cope and how did you mange now?
Loosing weight ? Active athletic life style? All the nitty gritty!
Also want to hear from Adults returning to diet .
Section 6 : Maternal PKU ( WOMEN WITH PKU WHO ARE Pregnant or have been pregnant.
Stories from PKU moms and their pregnancies , take us through the maternal PKU journey .
I will write for this section so need 4 others.
Section 7 : PKU Pioneer Adults
Diet for life was not the normal until the late 80s so many kids where taken off diet at a young age. We want to hear from older adults off diet ( over 40 years old ) , returning to diet and the struggles they face. How the diet has changed, have the changes and new research benefited from them? What struggled and challenges do they face? What did they go through an how is the diet now? What kinda of lives are they leading? What would help them ?
Section 8 : PKU Around the world
Stories about how treatment differs around the world, and clinics, tracking , foods , policies ect ect.
submissions would be taken form 5 different areas. Canada, USA , UK etc where the author would describe what treatment is like and how the diet is managed where they live. This chapter would bring attention to the differences and need for universal care standards.
Section 9 : New advancements in treatments. Are you a kuvan responder or are you on PALYNZIQ ? are you trialing another treatment? We want to hear all about your journey!
Section 10 : Stories from medical professionals who treat or work with PKU. What inspired you to work with PKU, about some memorable experiences you have had working with PKU , the changes you have seen since beginning work in this career, how care has involved over the years. what your hope are for the future and your thoughts and feelings on the current level of care and aces to treatments.
This section would be great for Dietitians, food companies, How much phe employees, cook for love employees, low protein food and formula distribution companies and creators. As well as researchers, doctors and nurses!
We want to include you all!
if this is something you may be interested in please contact myself through this page.
Thank you.
Amanda C
Discover more from I am PKU Strong
Subscribe to get the latest posts sent to your email.
I am PKU Strong 
Certainly interested in helping, section 5 and section 4 (if I can remember some of my college misadventures!)
–Les
LikeLike
Would love to have your participation
LikeLike