Announcements
Important stuff will go here one day.
Discussions
Struggling with Weight Loss!
PKU and weight loss seem to be difficult for me to balance. It seems I either need to diet to manage PKU or diet to lose weight. Choosing both is difficult for me. Of course, I lost weight once going on formula religiously but now I'm in a rut. ...a PKU weight-loss rut. I'm not willing to go off my PKU diet but want to…
I have PKU
I have PKU, the hospital put me on the PKU diet when I was born, but my family took me off the diet around age 6. Doctors used to say that most of the essential brain development is complete by age 6, but I still see minor symptoms. Most of the symptoms don't stand out, and most people I know have never noticed anything…
I wish
I wish this group wasn't specifically aimed at those with PKU...there are other metabolic disorders such as MSUD which should not be excluded. PKU and MSUD are supposedly "allied" disorders, but MSUD is always overlooked.
question???
Jessica - It;s Pam again. Have you ordered from PKU Perspectives online? ILooking at their website there are several items from country sunrise I'm thinking about ordering to try. Are you familiar with the omllet (imitation egg), the southwest burgers, or imitation chicken patties? If so, would you reccomend them? Also,…
introductions
Hi- I'm Pam. I do not have PKU, but do have homocystinuria. I was diagnosed last April. I am trying to follow a low protein diet, which as you know can be quite challenging. Since I am 54 yrs old, have already had a stroke, and am on Coumadin for the rest of my life, my doctor has not insisted on a low protein diet, but…
The future of medical formula/food coverage is at risk.
Advocate for Continued Medical Foods Coverage!!!!! Please read the following message, originally sent by the National PKU Alliance (npkua.org), and take action by sending your e-mail (the address is below) BY THANKSGIVING to encourage the Department of Health and Human Services to include medical food and formula as an…
