Social Media

May 11/ Day 11

Posted on by Amanda Horner

2015-05-11 14.25.05

#pkuphotoaday #pkuawareness #raredisease #pku
May 11/ Day 11
Newborn screening – saves lives! #pku is the first disease detectable through newborn screening. Ever since the 1960s babies born in Canada and the USA are screened at birth for pku and other diseases. It is that heal poke test . The blood is placed on this for and sent for screening to bc children’s hospital. Even an as an adult I still take my blood myself from my finger and place it on this same card and mail it to be tested. Pku does not have a device to test blood like diabetics . There is one in development. I wait up to 10 days to get my results. Babies born prior to newborn screening who where not dianosed develop mental retardation by 6 months of age. The damage is permanent.

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PKU Book Project

PKU Book Project 2015

Posted on by Amanda Horner

I have been slowly trying to work on a PKU Book project for the past 2 years.  It has taken a long halt over the last year as life has many twists and turns.  The interest wavered and I did not achieve my goal for submissions and had to put the project on the back burner for a while.

However the time has come to dust off the cobwebs and begin work again. I have partnered with Kay Emerson to help make my dream come true.

This project is so important to me , a goal I have set to achieve and  I dream of seeing it become a reality. It cannot do so with out the support of the community and I need your help!

For those of you who do not know about the Book project , or are new to my site. I am working on a collection of PKU personal stories. I have designed a book similar to the ” Chicken noodle soup for the soul” book series but about PKU. I am collecting PKU personal stories ; There are 11 chapters that I am looking for submissions in. Each submission should be no more than 4000 words and must meet the criteria of one of the following chapters. Once I have a suitable amount of submissions kay and I will begin editing and compiling the stories into a collection and will have the book published in hard copy and hopefully e-book files.

The categories are now as follows:
Chapter 1 : ( FULL) we have plenty of stories to fill this chapter.
New 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. Highschool with PKU
* Note this category at this time is empty. We have NO writers!
Chapter 4: College years : post secondary school experiences. ( university too)
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
 Examples:
* 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 throughout their careers
* thoughts and feelings
Chapter 12: Non Profit PKU charities
Note:  This category has no submissions or anyone signed up. We have NO writers.
Chapter 13: Low protein PKU food and formula company workers.
 Chapter 14 :Kay Marie Emerson and Families personal stories.
Chapter 15 : Amanda Cosburn Short Bibliography.
To submit a story, or to if you have any questions regarding this project please contact me at amandacosburn@gmail.com
Again Thank you everyone for your interest and to those who have already signed up or submitted!
Please pass this in and share share share , we need more interest to make this happen!!!
Thank you!
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Social Media

May 10th; Day 10

Posted on by Amanda Horner

#pkuphotoaday Container of LP Food.

Day 10 : container of lp food. My favorite low protein meals is the aproten pasta ! They are very filling and delicious . I don’t no how I would manage my low protein diet with out pasta .One of my favorite meals is low protein pasta salad. I mix my pasta with miracle whip, corn , onions, mushrooms, green onions, peppers and more!

2015-05-02 01.51.312015-05-10 11.11.26

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Social Media

May 5th ; Day 5

Posted on by Amanda Horner

#pkuphotoaday  “I wish people knew —— about PKU ”

2015-05-02 01.51.31  11233533_300782820045573_6573672962743711436_n

– pku is a rare genetic and metabolic disease.
– PKU is diagnosed at birth. It is a life long disease in which there is no cure . However with treatment it is manageable.
– having pku is not an allergy. My body cannot break down an amino acid in protein called phenylalanine. Phenylalanine is toxic to my body and can cause brain damage.
– the effects of pku are invisible. If I didn’t tell you about my pku you would not know I have it.
– I can pass on my pku genes
– my pku does not hold me back from living a normal life. It is a part of me.
– I have to monitor my blood like a diabetic does , but I don’t have a home testing device. I have to put my blood on a special card and mail it in the mail to bc children’s hospital for it to be tested. It takes 10 days to get my results
– if I didn’t have pku ..cole and I would have had a baby already. But there are things we need to consider and be careful about before conceiving.
– pku has evolved so much since my diagnosis and there has been many advancements and I am sure there will be many more
– when I was 12 I was pulled out of physical education class as they use to believe that it the breaking down of muscle caused my levels to be high.
-if I could eat anything I wanted I’d like to eat oatmeal or yogurt. And more rice !
-having pku effects how I live my life ever day but there are far worse disease out there so I consider myself lucky because pku is manageable.
– even having been treated my whole life in suffer from depression and anxiety . This is relatable to having pku as it makes me more susceptible to mental health issues
-newborn screening should be mandatory. .it saved my life and it is the only way to diagnose pku.
-If pku is not diagnosed at birth the baby will grow up with many aide effects such as being mentally handicap , developmental delays , and other neurocognitive impairments ..all which would have been preventable with screening.
– low protein foods are used as medical treatment in pku and my favorite low protein food is my medical pasta!

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Social Media

May 3rd ; Day 3

Posted on by Amanda Horner

#PKUphotoaday

PKU Friends.

These are 3 of my really good friends who have PKU like me. We are the same age, born in the same year , have the same clinic, and same medical team. However we did not meet until later in life.

Oliver and I met when I was a teenager, Amanda and I met in our 20s and Katie and I met when I moved to kamloops. Oliver lives in Vancouver, Amanda and Katie and I all live in kamloops.

I do not know what I would do with out these friends!

2015-05-02 01.51.3111178333_300518030072052_5532671595765939894_n

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