Hi guys & girls, My names Philip Maher, i'm an undergraduate in Dundalk I.T., Ireland studying Health Promotion & Physical Activity & as part of my final year am doing an assignment on Phenylketonuria (PKU) & the lived experiance. At present I have the main body of knowledge gathered & am working on the lived experiance. As i have not had much interaction with people with PKU i was hoping that through the online community you could help me by talking about what it's like to have PKU. Be it day to day living, work, as a child or socially. If you can help i would genuinly appreciate it, either on the topic board or by email to firstname.lastname@example.org.
My names Nicole, am 27 years old and i have severe classical PKU, and live in Scotland, UK, i have experience with living life with PKU and being through the Maternal side of PKU twice and i would be happy to help out.
It seems that I have had a very wild ride with my PKU. It has never effected me since 1974 but 34 years later it got worse and started to interact with my Hypoglycemia. Now I am trying to figure out the balance between protein intake and carbs. Curretly, or I should say, monday my levels were 1600 and I expect them to be higher this comming monday. My problem is that if I have too many carbs, mostly sugar, I get EXTREMELY sick. Complex carbs are not much better but I can take it for a longer period of time. Now I know more about how PKU feels and what happens to me or my brain I should say, when my hypoglycemia and PKU interact. I have to get my levels down soon. I can't think very well right now but I have code to write for both work and my PKU Tool.
If you are intrested, you can email me at erutkofske@PKUTools.com. I am not the norm for sure. Don't know if I would help or really mess with your expected results.