#1 Maria I think the answer to your question isn't easy. I hear voices of adults with PKU over 40ty that we are a lost generation. We were, as @Gregor Hammerschmidt wrote, guineapigs and we still are. We are the generation that allowed doctors to shape the care of kids with PKU and now we are often unseen by health systems, researchers, companies and PKU doctors. Perhaps you saw we, ESPKU, had this quick survey on Facebook and Instagram where we asked adults and seniors with PKU if they are satisfied with the quality of their PKU care. Mahority answered they are not. And it's not coincidence. I believe PKU we'll have influence on us as we get older in a way we may not think of today. What is never said out loud that's that our diet is not very healthy. We are at higher risk to be overweight horror obese. We had a survey about GI symptoms. We are waiting for the official results however here and there, many patients talk about them. Two years ago, we had no idea that menstrual cyclehas influence on PHE levels. What else we still don't know?
