Public health
The rare disease that almost killed little Seth will also be detected in newborns from December 1. The Flemish government has decided that.
Jolien Matthys from Boortmeerbeek testified earlier this week about the rare and life-threatening genetic disorder SCID, to which her son Seth (6) – ‘Sethje rocket’ – almost succumbed. She has been campaigning for some time for the inclusion of this serious immune disorder in the screening program that reaches more than 99 percent of babies in Flanders. At the proposal of Minister of Welfare Hilde Crevits (CD&V), the Flemish government is now responding to this. From December 1, screening for SCID (Severe Combined Immunodeficiency) will also take place.
All parents of newborn babies in Flanders can have congenital disorders detected in a blood sample from their child free of charge and voluntarily. The screening program has been around for many years and is perhaps better known as the former ‘heel prick’. A small blood sample is used to screen for rare conditions, for which early treatment offers a great advantage. In this way, sudden deaths, serious disabilities or chronic diseases can be prevented or the disease process can be slowed down.
Until 2021, the screening program included the detection of twelve rare diseases. Since 2022, this has been gradually expanded to include Tyrosinemia type 1, Tyrosinemia type 2, CPT1A and spinal muscular atrophy (SMA), the condition with which ‘baby Pia’ was born.
Seven more
Last year, homocystinuria and holocarboxylase deficiency were added. These are two serious metabolic diseases that can be treated if detected early.
Genetic tests are currently ongoing, so that screening for SCID can also be added at the end of this year.
A total of seven additional rare diseases have now been detected since the original screening program. To achieve this, Minister Crevits is investing more than 1 million euros extra this year. The screening program will therefore include a total of nineteen rare diseases by the end of this year. (vbr)
