#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 30th day 30
Blue kisses for pku
Back when the als ice bucket challenge was going on a few people in the pku community were debating doing a blue lips challenge . It did not take off.
Blue was chosen as the colour for pku awareness in America but in Canada the pku colour is orange .
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 29th day 29
Pku fact sheet /graphic
This is a screen shot of the maternal pku section of www.npkua.org
Women with pku who wish to have a baby one day must deal with mpku syndrome.
When Cole and I are ready to have a baby it is critical that I have my levels low and in range prior to conceiving , the duration of the pregnancy and breastfeeding.
If not there are many great risks to myself but also to the unborn baby. The side effects could be fatal.
For us to have a suscessful future pregnancy my levels need to between 2 to 4 mg/dl as whatever my levels are in my blood are double in the uterus and are toxic.
High levels to a fetus can lead to the baby being born mentally handicapped , disabled ,heart and brain defects , brain damage , microcephaly , poor fetal growth , or more .
Despite how scary this sounds. ..if I maintain my levels and keep myself healthy it is 100 % possible to have a normal pregnancy and healthy baby .
Many women my age have had great success . I have met many inspirational women at my clinic who have perfectly healthy children with no side effects.
Now with our low protein subsidy and support systems I have in place , I am hopeful for the future and dream of the day Cole and I start a family.
At times it is very overwhelming and scary . Sometimes I feel this is the worst part of having pku. Sometimes I think if I didn’t have pku..Cole and I would have already had a baby.
This year we celebrate 10 years together and I turn 29. I always wanted to have a baby before I was 30. It is still my dream but seems to be still out of reach.
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 27 / day 27
Pku shirts.
What a better way to spread awareness then with a total shirt ?
These are my pku shirts . The white one was one I had made for myself from Vista print years ago.
The orange shirt is from our advocacy campaign to get our Government to cover low protein foods and kuvan. We all wore them to our 2012 events and media coverage . Our camping was a success and we achieved our goal of funding for low protein food in BC!
Health minister Terry Lake rewarded bc residents with a 250 dollar monthly subsidy or 3000 a year ! Our coverage began January 2014!
The black t shirt is the shirts we sold to raise funds and support for Avery ride for pku in June 2014. Avery ride for pku was a ride across Canada by Kevin Dube. His neice Avery was born with pku and Kevin wanted to do something for pku. Kevin road coast coast summer 2014 and raised over 60 thousand dollars for pku! It was a huge success
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 26 /day 26
Eat your veggies!
Since having pku means I eat a lot of fruit and veggies I have really taken an interest in growing my own .
For the past 2 years I have quit successful gardens . With inspiration drawing from my mother in law and my sister in law. My mother in law Tracy has the largest garden I have ever seen. It’s half an acer and she grows everything !! I love harvest time at the Rickett ranch. During the summer we get most of our produce from her. I grow at home just what we eat on a daily basis. Salad essentials .
These are some of my seedlings I started inside in April. Ready for transplantation to the outdoor garden this week.
These are tomatoes , broccoli , peppers , onions , pees, celery and asparagus.
I start these seeds in doors and when the ground is ready outside I plant lettuce , carrots , beans , cucumber , radishes ,beats and more. I also planted potatoes this year. They are doing fabulous! !
There is nothing like growing your own food . Knowing exactly what it takes and what is in it. To dig in the earth and make these seeds grow into food.
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 25/ day 25
“Only a pku’er” food combos
Here is my breakfast (may 28th)
Low protein omelet with dayia cheese shreds , onions and garlic.
White peach
And my bettermilk flavored with graphics artic mio!
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 24th (coles birthday ) day 24
Pku event photo
Please join us thus Saturday as we end pku awareness month with our annual walk. All proceeds go to canpku!
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth
May 23 /day 23
Pku ink
*photo not mine
Many people use art as an expression of self. To some your body is art , a blank canvas waiting to be molded.
For those who boldly and proudly show there support of pku on their bodies there are a few go to templates for tattoos . The most popular being the blue awareness ribbon , or a DNA strand. I have seen many creative pku tattoos circulate around the Internet.
I myself have considered it for years but just can’t get past how permanent they are .
#pkuphotoaday #pku #phenylketonuria #pkuawarenessmonth May 22 / day 22 New treatments All of my life I have drank a special medical formula . It is full of amino acids nutrients vitamins and minerals . As well as protein with out phenylalanine .
If you are not yet a member of CanPKU, please consider it!
There are many perks to being a member!
• Direct contact from CanPKU regarding newsletters and event invitations;
• Direct access to new information regarding treatments, research and Provincial/Territorial advocacy campaigns;
• Support from other individuals and families who understand;
• Reduced registration fees for all CanPKU events;
• Priority access to travel bursaries for CanPKU events, when available;
• Opportunities to volunteer and make a difference;
• Tips on advocacy and creating awareness in your community; and
• Voting rights at Annual General Meetings and Special Meetings.
By becoming a member you are showing your support for CanPKU to accomplish its goals, which include:
• Creating awareness about PKU and other inherited metabolic disorders;
• Providing a supportive community for those living with PKU and other inherited metabolic disorders;
• Increasing opportunities for PKU families and others to attend educational and networking events;
• To improve the lives of people living with PKU and other inherited metabolic disorders;
• Promoting and supporting research; and
• Advocating for increased treatment coverage across Canada.
There is a small annual fee to becoming a member, but trust me; it is well worth it!
This fee helps us fund our events, socials, education seminars . It helps us to campaign for advocacy and treatments , it has helped us achieve our success with the BC low protein food subsidy .
CanPKU has such an impact in every province bringing together our community and connecting us all. Becoming a member helps show our support and gives thanks to this organization.
Please consider joining me and show your support for CanPKU.
Great things come from Victoria BC ( not just me LOL) this teen is one of them!!!
This is so amazing!!! This teen is from my home town of Victoria BC , Where I was born and raised . ( I relocated to kamloops in summer 2012)
and he is responsible for helping making my life long dream as well as many others come true!
Gotta admit it was both surprising and very exciting to log on today and too see this in my email today from my mom.
Not just that its about PKU and its featured in my hometown paper the Times Colonist . I never thought id see PKU and Victoria connected in the news in this way!!
Very proud Victorian moment!
I plan on contacting this young man and hope to meet him when I go home to visit this summer!
The Article in my hometown paper the times colonist today is as follows :
Nathan Kuehne went to the Canada Wide Science Fair two years ago and nothing has been the same since.
It’s not so much that the Glenlyon Norfolk School student won a silver medal for research on the optimum amount of charcoal in soil for plants.
It’s more that he got his first look at the type of research being done by other students across the country.
“Kids had developed new ways to create batteries,” he said. “Kids had actually developed treatments for cancer.
“I hadn’t been exposed to that kind of high school research before.”
Here were average high school students devoting hundreds of hours outside the classroom to research that could really make a difference to people’s lives, he said.
Inspired, he returned home and embarked on work to develop a urine test for tumour-based cancers under the tutelage of Fraser Hof at the University of Victoria.
In his understated way, Kuehne, 17, said the project was “largely successful,” picking up a gold medal in his Grade 10 year.
“The problem was it required an expensive machine to run,” he said, whereas his goal had been to develop an at-home test.
He proceeded to modify the test in Grade 11 and found that, while the new version didn’t work for cancer, it was effective at monitoring phenylketonuria, or PKU. Those with the genetic disorder are unable to break down the essential amino acid phenylalanine, which is commonly found in protein-rich foods and some artificial sweeteners.
The disease affects about one in 12,000 newborns in North America, according to the website of Canadian PKU and Allied Disorders Inc., a non-profit organization. If left untreated, the disorder can lead to developmental disabilities and other neurological problems.
Once Kuehne discovered that his test could be used to monitor phenylalanine levels, he learned there was a desperate need for an at-home device that would allow people with PKU to monitor their condition and prevent symptoms. Other tests can take weeks to give results, while Kuehne’s takes less than 10 minutes.
“That motivated me, but also gave me an acute sense that this is something that could really make a difference,” he said. “People are suffering without a test like this right now.”
So last summer, while other young people his age were at the beach or otherwise enjoying their vacation, Kuehne was putting in eight-hour days in Hof’s UVic laboratory.
“To excel at science fair, you have to be willing to try experiments that you don’t know if they’re going to succeed,” said Erin Dallin, Kuehne’s chemistry teacher and mentor at Glenlyon Norfolk.
“There were times when it just didn’t work and he came back to the lab the next day and kept going. So that’s a lot to ask of somebody who is a teenager.”
Kuehne’s drive and determination led him to a first-place finish in the Vancouver Island Regional Science Fair and another gold medal at the Canada Wide Science Fair, where he finished in the Top 10 among 469 competitors.
He recently filed a patent application for his self-diagnostic test and hopes to publish his work in a peer-reviewed journal.
“I hope to keep working on it,” he said.
The son of a university professor and an accountant, Kuehne plans to pursue a career in engineering or medicine with a focus on research.
“I love exploring new boundaries,” he said, “but at the same time, I like seeing them applied to people.”
– See more at: http://www.timescolonist.com/news/local/victoria-teen-tests-himself-with-hopes-of-helping-others-1.1945269#sthash.8ftW1N7G.dpuf
A note to Nathan:
Words cannot describe how much this meas to me. As an adult from victoria living with PKU! This is history in the making and will have such an impact on lives like mine. Truly a dream come true and nothing I thought i would see in my life time. You simply cannot know how this will effect and change our lives. I have been waiting for this. Feels like a dream!
Amanda Cosburn LPN and PKU Adult.
Since posting this post, Nathan’s Science Teacher Erin has contacted me through my pku facebook page and we are planning to meet up when I travel home to Victoria in June. I look forward to shaking this young mans hand and thanking him. This one grade 11 youth is potentially responsible for changing my life, for impacting many lives and the course of PKU treatment .
I am PKU Strong 