Difference between revisions of "Team:Vilnius-Lithuania/Description"
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| + | <p class="Raleway">It has been more than 50 years since Robert Guthrie suggested the first newborn screening program for phenylketonuria (PKU). To this day, avoiding foods containing high levels of phenylalanine remains the most important treatment factor for people with PKU. Almost every variety of food rich in protein must be avoided, this includes dairy products, meat, fish or chocolate. Despite the fact that strict diet is an effective way to prevent clinical presentation of PKU, it is still very difficult for the patients to implement it into everyday life. Only about half of the patients with PKU in Lithuania report to be following the required strict diet. Even those reporting to be following the treatment regime have an IQ that is about one half a standard deviation lower than their unaffected siblings or the population average. Moreover, people with PKU cannot get enough nutrients using conventional food sources and about 70-80 % protein intake must be comprised of low-phenylalanine supplements. There are situations in which getting the required mixture is problematic. For example, after Lithuania declared its independence in 1990, its supply of protein supplements was cut off due to an economic blockade. As a result, people born that year have clinical manifestations of PKU because proper treatment was not available. Finally, protein supplements are costly: in Lithuania a child under 18 years old is compensated for about 12 000 euros (13 160 US dollars) annualy.</p> | ||
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| + | <p class="Raleway">Lithuania has some of the most experienced specialists in the region working both with newborn screening and the treatment of PKU. In 1975, Lithuania became the first country in the former Soviet Union to have started a newborn screening program for PKU. It has been a substantial achievement for that time period, as not even Moscow had a newborn screening program of its own. For comparison, our closest neighbors, Latvia and Estonia, started their screening program for PKU in the early 90s. Lithuania’s active involvement in the new treatment options for PKU and other genetic diseases was one of the reasons we chose it as our topic.</p> | ||
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{{Vilnius-Lithuania/Footer}} | {{Vilnius-Lithuania/Footer}} | ||
Revision as of 22:47, 16 October 2016
Project
Problem
It has been more than 50 years since Robert Guthrie suggested the first newborn screening program for phenylketonuria (PKU). To this day, avoiding foods containing high levels of phenylalanine remains the most important treatment factor for people with PKU. Almost every variety of food rich in protein must be avoided, this includes dairy products, meat, fish or chocolate. Despite the fact that strict diet is an effective way to prevent clinical presentation of PKU, it is still very difficult for the patients to implement it into everyday life. Only about half of the patients with PKU in Lithuania report to be following the required strict diet. Even those reporting to be following the treatment regime have an IQ that is about one half a standard deviation lower than their unaffected siblings or the population average. Moreover, people with PKU cannot get enough nutrients using conventional food sources and about 70-80 % protein intake must be comprised of low-phenylalanine supplements. There are situations in which getting the required mixture is problematic. For example, after Lithuania declared its independence in 1990, its supply of protein supplements was cut off due to an economic blockade. As a result, people born that year have clinical manifestations of PKU because proper treatment was not available. Finally, protein supplements are costly: in Lithuania a child under 18 years old is compensated for about 12 000 euros (13 160 US dollars) annualy.
Lithuania has some of the most experienced specialists in the region working both with newborn screening and the treatment of PKU. In 1975, Lithuania became the first country in the former Soviet Union to have started a newborn screening program for PKU. It has been a substantial achievement for that time period, as not even Moscow had a newborn screening program of its own. For comparison, our closest neighbors, Latvia and Estonia, started their screening program for PKU in the early 90s. Lithuania’s active involvement in the new treatment options for PKU and other genetic diseases was one of the reasons we chose it as our topic.
