Future prospects for XLP1

The outlook for children with XLP1 is improving all the time, owing to better recognition of the condition and improved diagnostic testing so that treatment can be started as quickly as possible. New types of medicine are also being developed to treat HLH more effectively and with fewer side effects. HSCT is currently the only cure for XLP1 but researchers are working hard to develop gene therapy as an alternative.

Genetic counselling for the family is important and will be initiated by the specialist centre. Prenatal diagnosis is available for future pregnancies, provided that the faulty gene can be identified. You can find out more information about genetic testing in our leaflet 'Genetic aspects of primary immunodeficiency',
available at www.immunodeficiencyuk.org/static/media/up/geneticaspectsofpid.pdf