Phenylketonuria (PKU) World Wide Support Group!

This group was created in 2005 and was the first group on Facebook for PKU. The purpose of this group is to be a friendly, non judgmental, and free space to get or give support for those with PKU, their family and their friends. This is a place to ask questions, To give or get advice and to socialize with others from all over the world who have been lucky enough to have PKU touch their lives.

There are a few rules to keep the group focused and to help everyone feel welcome to be an active member. Posts in this group or answers to questions and advice should not be seen as medical advice , and you should always consult your PKU clinic if you seek medical help. Debates are welcomes however, I do not wish to see anyone attacking or ganging up on anyone else, anyone who is forceful, rude or attacks anyone else the post will be deleted and the 3 strikes rule will apply, after 3 offences, you will be removed or banned. No spamming!! if you advertise spam you will be removed , the post will be deleted and you will be banned from the group. Also no foul language or cursing.

For questions, comments and concerns please email myself, your admin Amanda Cosburn at [email protected]

This is a strong group, with it being one of the biggest I am proud of how far it has come and how active it is. We have been lucky to have very little issues. I hope that everyone feels welcome here and continue to be an active member!

For those of you who do not know what PKU is or are new to the group:

PKU or Phenylketonuria , is a rare genetic , metabolic and BRAIN THREATENING disorder where the body cannot break down the essential amino acid Phenylalanine. Normally Phenylalaine or PHE is converted into tyrosine.

People born with PKU are missing the enzyme that makes this conversion possible. Since the PHE cannot be broken down, it accumulates in the blood and brain abnormally and causes, brain damage, mental retardation and other neuro cognitive side effects.

Since the 1960s, all babies born in Canada and many other countries around the world are screened at birth by new born screening( that heal poke test ).

Persons who are diagnosed with PKU at birth are treated with Medically necessary foods, medical formula and now the first prescription drug KUVAN. There is also a new drug called Peg Pal that is an injection like Insulin that is in the 3rd phase of human trails.

If Babies are not diagnosed at birth they will be mentally retarded or suffer major cognitive side effects and delayed developmental growth by 6 months old .

Treatment is not universal and it was not until the late 1990s that medical professionals realized that PKU treatment is life long. There is no cure, but it is manageable. We have a lot of work to do to bring PKU care up to standards and to improve the quality of life for those with PKU. However, it has come a very long way!