Esta é a minha primeira vez a postar neste blog e para começar vou postar aqui um excerto (em inglês) de uma investigaçao que me enviaram referente a PKU.
Esta informaçao foi tirada do site http://www.pku.com, aconselho a todas as pessoas sejam elas doentes ou familiares a registarem-se, pois contem noticias e informaçoes sempre actualizadas e alem disso podemos entrar em contacto com pessoas de todo mundo podendo assim partilhar experiencias.
"Molecular Genetics and Metabolism recently published the first supplement ever dedicated entirely to PKU. The supplement, Phenylketonuria, Psychology and the Brain, is a collection of the most recent scientific information on brain functioning in PKU, treatment options, and more.Researchers found that people with PKU that are treated with diet alone continue to exhibit brain, mood and social function problems that could harm their ability to reach their full potential. Current treatment guidelines are based on dietary restriction and metabolic control of Phe levels and do not include the latest research. Unlike conventional thinking, the studies also found that success of treatment should not be gauged on Phe levels and IQ alone and should also be evaluated based on brain function, nutritional status, emotional well-being and quality of life.The supplement points out the gaps in our knowledge that needs to be addressed to optimize positive results for people with PKU. New treatment options, including drug therapy and alternative low protein foods, should be integrated into the treatment guidelines.For more information on the supplement, please click here or speak to your PKU clinic. If you are interested in learning about new treatment options, talk to your doctor, or visit www.pku.com."
Olá Ana Rita,
ResponderEliminarObrigado por se ter juntado ao grupo!Eu já estou inscrita nesse site e recebo regularmente a newslwtter que me parece bastante interessante muito focada no tema pku. No site não consigo perceber muito bem como é que se entra em contacto com os outros membros. Podíamos ser friends?
Bj Sofia
Eu ja to inscrita a algum tempo mas tambem nunca enviei nenhum pedido de amizade, so tenho recebido de outros membros:s
ResponderEliminar