PKU or Phenylketonuria is a rare metabolic and genetic disease where people who have PKU are born with out the enzyme to break down an amino acid in protein called Phenylalanine into tyrosine. The more protein they consume the more phenylalanine is consumed and it accumulates in the blood and causes neurological impairments leading to mental disabilities and brain damage. PKU is a serious disease that affects the brain but can be controlled with a restricted low protein medical diet. A person with PKU must drink a special medical formula, eat medical low protein imitation and chemically altered foods and test their blood regularly to keep phenylalanine levels in a safe and non toxic range.
The PKU diet is for life. The is one drug currently approved in the treatment of PKU but it is not covered in most canadian provinces.
when a women with pku wants to become pregnant it is recommend that they be on a pre conception diet for 3 to 6 months prior to conceiving. As levels in the uterus is 1.5 times higher in the uterus and can cause damage to a fetus. If a women with pku is pregnant and suffers from high levels it can cause brain damage and physical defects to the unborn baby. Blood levels must be maintained between 2 and 6 mg dl to maintain a non toxic environment and optimal growth development.
weather you are a women with PKU or or not, the low protein diet is very time consuming and challenging. Many adults who have PKU struggle with depression and anxiety as well as complying with diet.
All food even low protein medical foods all need to be weighed and measured , they need to be tracked by amount of phenylalanine per milligram .
Every day a person with PKU must track everything they eat, weigh out all foods, and
meet a daily intake of phenylalanine . They cannot be under or over their daily amount.
Intake can be tracked by phenylalanine, grams of protein and calories. Every gram of food, including oils, spreads, condiments, spices, fruits , vegetables , snacks, desserts and everything has to be counted. As every thing has protein in it.
If someone is not on diet or has control of there levels, they can suffer from a wide rage of side effects that can impact activities of daily living, maintaining relationships, and quality of life.
However if diet and control are maintained people with PKU can live a very normal life.
Despite having PKU , I have gone to college, became a nurse and worked in long term care for 6 years and now have an 8 week old healthy baby girl!!!!
I also spend most of my free time volunteering for CanPku , advocating for PKU , hosting events, and writing a blog about my life with PKU.
There is approx 200 people in BC living with PKU. There are approx 8 families in kamloops that has a loved one living with PKU.
On May 28th 2016 we will be hosting our “kamloops walk for PKU” At MacArthur Island from 130 pm to 330 pm and we hope to raise $1000.00 .
100 % of Donations will donated directly to Canadian PKU and Allied disorders INC to help fund education seminars, socials, patient suppots, research, and lobbying campaigns for coverage of medical supports in each province.
Please consider making a donation to support PKU and CanPKU.
CanPKU is not a charity so therefore we cannot issue tax recpits.
Please feel free visit the following links for our fb event page and our go fund me page :
Go Fund me page :
Fb Event page :
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