I spent half an hour writing out a post for this group, but then my computer crashed and I lost the post. I will try again though i really hate repeating myself as well I hope i will capture much of what I wanted to say.

As this group expands, we cross international boarders and welcome many diverse people into our community, we tend to forget about each other on a individual basis. We all have our own thoughts, feelings and opinions. thus my reasoning behind this post.

I feel that I need to ask that we all be a bit more considerate of things we post and comment on. A lot of postings in this group are very emotional and become quit passionate.

I mention this because tonight I feel very emotional and hurt over off hand comments made towards pku adults vs being on diet.

It makes me so sad and frustrated. It hurts so much to hear people talk and say things like ” well just follow your diet” ” just go back on diet” ” its just food” and other such remarks. I am one to always say, things we face are not always PKU related, that far to often pku adults blame life problems on their PKU. But however on the flip side of the coin, it is not always easy. It is not as simple as drinking our formula or only eating low protein.

There are so many more sides to having PKU other than diet. There is a whole side that includes psychosocial, physiological , mental , emotional and physical aspects. Specially in adults who have been taken off diet, struggled with diet , have been inconsistent, or have not had access to treatments and low protein foods. It is not as easy as non pku people thing.

I use to tell myself all the time, that once I had low protein food coverage that it would be so easy , that i would never fall off track again , that i would keep my levels in range always. But now I sit her tonight confessing to you that is not the case. I still struggle. I still have side effects. I still have trouble keeping motivated and working hard on tracking and managing my intake, Cooking or baking, meal prepping and finding the time to cook or bake from scratch. Avoiding temptations like grabbing something quick.

I have ups and downs , i fall off track. I get discouraged and I struggle with depression and anxiety. I find myself so jealous and envious of the attention children with PKU get , knowing they will have an easier time. I am very happy for them and grateful for how far pku treatment has come and how our community has grown. Thought I find it difficult as an adult when I see companies, non profits, media and government focus on the children. It makes me feel like why not me? why not the others like me? don’t I deserve support? don’t I deserve help too?

I am 28 years old and I strive to be the support and voice for the adults and an advocate for anyone who has PKU touch their lives. I am the most involved adult I know. I find so many adults have been discouraged from joining forums like this. They cannot relate to many others and they feel disconnected. Judged even. They feel unsupported and that no one can relate to them. So I ask once again please be considerate when commenting. We do not walk in each other shoes, though we walk a similar paths. Please be respectful to others feelings and things you do not understand. PKU effects everyone differently, patients, family and friends. It is dynamic as we are. All of our journey’s are take different paths. We are hear to support each other, and to learn from each other.

I apologize for such a long post, thank you for understanding and thank you to those who read this post.