Though I am very happy to see how far treatment and quality of life for PKU has improved over the years , even just in my short 30 years  .

Then there is another part of me is jealous of PKU Kids today.  So much is geared to ward todays children.  Parents are much more involved and advocating to make sure they do not miss out and lead a normal life and have a good relationship with food and a healthy life style.

There is a much greater sense of community , thanks to social media. There are more resources for support and families are connecting more.

I did not meet anyone else with PKU until I was 13.

Today youth can log onto fb and look for recipes, share meal ideas and photos, take part in discussions, ask questions, seek advice and connect with people there age. Parents and caregivers can join groups and have the same resources available to them.

There has been advancements with tools for tracking diet like How much phe and apps.

Families are coming together to socialize and hosting events.

Even the foods have improved.  We have so many more choices and imitations of regular foods that kids dont have to feel left out eating anything different from there family and peers.

You want a cheeseburger like the rest of your friends? Here is a camburger and dayia cheese? Want to roast hotdogs while camping with family? Here are brooklyn dogs? Pizza? icecream? pancakes and waffles? bagels and pasta?

Lets not forget the formula? Chocolate, strawberry, vanilla, orange, tangerine, swirl, GMP protein. Powders, liquids, pre made mixes, bars, sachets, gels, shakes, puddings! Various brands and low protein companies. Variety ! Why not mix it up and have 2 different ones?

We have choice now!

Choices I did not have . Choices I missed out on. That I feel if I had of had from an early age I never would have cheated on my diet! I never would have hid my food from my peers, or thrown it in the garage when I got to school.  I may never have had levels above 12 . I would be saved from high level symptoms and hospitalizations.

Kids today dont need to face the battles I did. They wont feel different or left out.

So when I am at events and I hear parents lobbying to the government for more advancements such as kuvan so they have the quality of life they deserve , I stand in support but I also think.. What about the adults?

How do we achieve the quality of life we deserve when many of us have already learnt these bad habits, have a bad relationship with food? struggle with compliance?  when we are not use to some of the low protein foods because we didn’t have them so we developed a taste for ” regular foods” ? How do you make yourself eat the low protein rice that might as well be pasta made in the shapes of grains when you have the taste and experience of real rice?

Or what about the adults who have no aces to low protein foods, because they have either aged out of the government funding, or they have no private insurance?

My heart aches for the adults like me who ride the roller coaster of com pliancy. Who are stuck on the merry go round of high level symptoms or battle with side effects such as eating disorders or mental health issues developed by not staying on diet?

This is why I decided 8 years ago to dedicate my life and my voice to being an advocate for the adults. Sometimes its very frustrating being the only one up trying to get the attention we need.  In my experiance so many adults have shyed away from anything to do with the diet.  Its like pulling teeth to get them to part take in social events, come out to seminars, partake in the community.  Try new low protein foods and recipes and find there way back and value their health.

I see adults blame everything wrong in their life on their high levels from relationships to work and jobs and any failure and I get frustrated , and want to scream come to the events, get involved and be inspired and get back on diet.  It is so much easier now.

Or when a maternal PKU mom only returns to diet long enough to have her baby then goes right back off again because the temptation of a real cheese burger or meat is to alluring. She is not use to the textures and tastes of the imitation low protein options. Or insurance wont cover her now that shes had her baby. I fear for her and the impact that bad levels will be on her to parent.

My thoughts always go back to if only they had the opportunities kids today have.  If only we had all these options and choices as kids , we would be repping the benefits now. The next generations will learn from us and it will continue to improve.

Being born today with PKU is not a curse.  Today is a great time to have PKU and it will only get better.

In the mean time… how do we help the adults?  How can we bring them back on track? and improve their quality of life too?  I want to hear from you ! Please write me at my email or leave a comment to have your answer featured on a part 2 blog post.