HI evrybody! I'm so glad I found this site! I am 46 yrs old…have 2 girls ages 13 and 10 (both non-PKU) and recently went back to monitoring phe levels in May 2009…after 10 yrs off-diet! I tired the Kuvan…but it did not work for me…I was not a responder… would LOVE to connect with other adults about my age w/ PKU..and all of you people as well! Im glad we are here!
Hi Terri… Glad to hear you are back on diet! I am glad you found this site too! I think there are some people out there around your age looking for people with PKU around the same age. I am only 24, however would still love to stay connected! I am sorry to hear Kuvan did not work for you. Stay optomistic though because I am confident there is more to come to make life with PKU easier to live with. Where are you from?
I was off diet for 34 years. Just started back in Feburary due to effectes of PKU which have never effected me before. I tried Kuvan but had adverse reaction to it and needed to be taken off after 7 days. I am working on an applcation for PKUers. You can find more on facebook looking for PKU Tools or go to http://www.PKUTools.com
hi terri im 40 yrs old with 2 boys 18 an 13. i have classic pku an was taken off the diet when i was 9yrs old. the only time i went back on it was when i was pregnant so most of my life ive been off the diet. ive thought about going back but to be honest im not sure if i could handle eating the food an formula after years of eating anything i want. im sure my phe levels are off the roof right now. ive wanted to find other pku adults who understnad whats its like living with pku. im glad i found this site.
Hey there! Im also new to here and would love to meet others with PKU. Im 24 and I have been off and on with my diet. Im on Kuvan right now, so it helps- I was shockingly surprised that it did bc my Dr told me most people with classic pku, like myself, never respond to it. My husband and I are currently trying to start a family and it will be my first sooo I will have lots of questions, =) Thx!
Hi, I'm 36 and was off the diet for about 30 years. I've been back on for about 3.
I definitely recommend going back on diet. Even if you think you aren't having problems being off diet, it's worth being back on.
I am on Kuvan, have been for about a year, and I've gotten my levels from around 12 prior to Kuvan to well below 6. My most recent level was actually a 1.6.
Also, one of the big issues that has been discussed recently is the increased likelihood of osteoporosis in PKUers. Off-diet, apparently low bone density is common, and on-diet, PKUers often don't get enough calcium.
I just had a bone density scan yesterday (should get the results tomorrow), and started a calcium supplement today.