Cordea Pku

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Cordea Pku

  1. 1. PKU LIFE ROMANIA Association The association of the people with Phenylketonuria from Romania
  2. 2. The PKU Life Romania Association had been funded in October 2005, with 11 members in it, and now it counts 39 members.
  3. 3. The targets of our association are: 1.Taking steps to the Ministry of Health for – the generalize of the screening - the assurance of treatment for the diagnosed children - the assurance of treatment and medical assistance for the PKU adults
  4. 4. 2. The obtaining of the dietetic food for the PKU patients 3. The parents and the PKU people counsel
  5. 5. The frequency of the disease in Romania is 1 to 7.500 newborns. According to this frequency, statistically, the number of the people affected by PKU is 900. The number of the diagnosed people in the two centers of diagnose and treatment of PKU –in Cluj and Bucharest- from 1976 until now, after the sporadic testing of the newborns in 10 (out of 41) counties is 180.
  6. 6. In Romania the screening activity is resumed to the testing for precocious diagnosis to Phenylketonuria and Hypothyroidism of 25 % from newborns.
  7. 7. The PKU treatment situation 900 The no. of the 800 affected 700 people,statistic al 600 The no. of the 500 diagnosed PKU 400 people 300 The no. of the 200 treated PKU 100 people 0
  8. 8. The PKU people situation in Bihor County, where it’s screening since 1976 30 30 25 25 Diagnose Diagnos d people 20 20 ed people 15 15 Treated Diagnose people 10 d people 10 after the 5 age of 1 5 0 0
  9. 9. The mental development to the PKU Life members 40 35 30 25 Total no. of children and adults 20 Children with normal 15 development 10 5 0
  10. 10. In Romania doesn’t exist any PKU adult with normal psychic development. The PKU adults aren’t treated in Romania. To the diagnosed children isn’t assured the proteic substitute in enough quantities – the base of the diet – and the other dietetic products can’t be found in Romania.
  11. 11. To the request of the association to the PKU Screening Centre in Cluj, of monitorizing the PKU children, the answer was negative – the Screening Centre in Cluj doesn`t make periodic tests to verify the Phenilalanine level from blood to the PKU children.
  12. 12. Because of the social dimension of diagnose and treatment of the Phenylketonuria, there are necessary measurements to assure to the PKU people the right to a normal life.
  13. 13. Cooking studio, PKU Centre, Szeged, Hungary, 2006
  14. 14. PKU Life Romania Association – meeting, Oradea, 2007
  15. 15. Cooking studio – Oradea, 2008, guests: specialists from the PKU Centre of Szeged, Hungary
  16. 16. Cooking studio – Oradea, 2009, guests: specialists from the PKU Centre of Budapest, Hungary
  17. 17. Cooking studio – Oradea, 2009, guests: specialists from the PKU Centre of Budapest, Hungary
  18. 18. Thank you!

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