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one being the most frequent”, tells Dr Schlesser. “Medicine tailored to target particular mutations has started to appear and this is where future seems to be now.” In Luxembourg, 2 to 3 babies are born with CF each year. Unless they have intestinal obstruction (meconium ileus) at birth (10-15% of CF cases do), they won’t be diagnosed until later on. Unlike what happens in other countries – like in France since 2002 – systematic neonatal screening for CF does not exist in the Grand Duchy. The test could however easily be done from the same blood sample routinely taken from the baby’s foot three days after birth and used to detect other disorders. “We’re hoping the project of neonatal screening will become reality here soon,” admits Dr Schlesser. “When CF is detected later on, there’s a bigger risk of perma nent damage.” “Early diagnosis allows quicker intervention with therapies and a better life expec
tancy,” agrees Mike Beckers. In early childhood, one time out of two, suspicion of CF will occur because of recurring or persistent respiratory infections. “But there can be many other signs, like poor growth or intesti nal problems”, says Dr Schlesser. To identify a person suspected of having CF, the sweat chloride test is used. Sweat is induced and collected and chloride levels measured. “We do around 10 sweat tests a week here, for two positive results per year,” explains Dr Schlesser, who is also behind the creation of the Luxembourgish Cystic Fibrosis Clinic in the CHL. At the moment, it is especially patients over 16 years old who are treated here, but plans are to see the centre grow as soon as possible. For now, many CF patients living in Luxembourg get treated in other countries where speciality clinics have existed longer. “We need a unique clinic in Luxembourg”,
Dr Marc Schlesser hopes Luxembourg will adopt neonatal screening for cystic fibrosis in a near future. Dr Marc Schlesser espère que le dépistage néonatal pour la mucovisci dose sera bientôt systématique au Luxembourg.
insists Dr Schlesser. “That requires a dedicated, multidisci plinary staff and management. For the moment, we don’t have the necessary means but we’re strongly hoping we soon will.” One of the main activities of the Luxembourgish Cystic Fibrosis Association (ALLM) – run only by volunteers – is to inform and support families affected. “Find ing out your child has CF puts a lot of pressure on the family unit,” says Mike Beckers. “You’re living with a time bomb, there’s a lot to deal with. Divorce rate is pretty high...” The ALLM also provides its members with therapeutic supplies and equipment. New complications Even though all concerned are adamant about CF patients living as normal a life as possible, there is no denying that the demanding treatments disrupt daily life. “Cystic fibrosis causes the body to produce a thick, sticky FLYDOSCOPE
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