Lifting the Limits for PKU - Philadelphia 2019
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- čas přidán 8. 07. 2024
- Our most recent Lifting the Limits for PKU event was held in Philadelphia on Saturday, April 27, 2019, at the 23rd Street Armory. What an amazing evening to raise awareness and funds for PKU research!
I have PKU. If I could I wish I could tell these parents and children that having PKU does not and should not stop you from achieving your dreams and goals in life. I was diagnosed with classical PKU at one week old. Three weeks ago I turned 26. In my 26 years in life I have accomplished everything I have wanted to, and having PKU is the least interesting thing about me. I am in my second year of a PharmD program at the University of Utah. I have competed in high level competitions in equestrian sports, and I have tried to be a kind and caring person to those I meet. While finding a cure is so important, I just wish I could tell those worried parents out there that living a very fulfilling life with PKU is possible. I'd be lying if I say that it has always been easy. Have I struggled with high phe. levels, anxiety, depression, scary M.R.I findings? I sure have. It isn't easy. Then yet again, everyone has their own individual challenges. I guess the biggest message I'm trying to convey is that at some point we decide that it WILL NOT define us. It becomes "the way it is" at some point, and you find meaning in so many other things in life. You learn to cope with what your normal is, and prove to yourself that what you eat makes you no less of an individual than the next person.
Right on, love you're perspective. My wife has pku, and views life the same way. We have two beautiful children, and she is a mentor for expecting mothers with pku. Congrats on you're achievement's and keep powering thru!
Thank you
You Parents and Children are so brave! Thank you for telling your stories
my sister was born with PKU.
Me my Twin brother and my mom got pku I have good job but I off my diet now I'm mantel handicap but u son followed the pku diet he be smart
I have classical pku, late diagnosed by 2 weeks. I have to weigh and measure everything. What i hate most is the tiny portion sizes- 1 ounce of meat at lunch and 1 at supper.
I have pku. I Run my own mobile detailing biss. i got Off diet at 19 I am now 33. I eat about everything but try to limit myself with Portions. Now Stumbled on this video looking how I can gain muscle safely? is it even possible 😂 I don’t know but always Wondered?
My son was misdiagnosed negative pku after initially testing positive. 11 yrs later a dna test showed he is pku positive. I just found out 3 weeks ago. My son suffers from autism and adhd he has severe behavioral issues so severe that prevent him from attending school he stims severely he has social issues he has had seizures and is on multiple medications. I and his doctors believe the majority of his issues are due to the untreated pku. I am in shock.
Hii
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I have pku, but I don't have a job so I can't buy Formula. My life sucks
Oh I have pku and I wish I could give u some of mine too😟