Future prospects for XIAP deficiency

The outlook for children with XIAP deficiency has improved, owing to better
recognition of the condition, improved diagnostic testing and more effective
treatment, including HSCT for complications such as HLH. For those children with XIAP deficiency who do not develop HLH, a good quality of life can often be maintained with prophylactic (preventative) antibiotics and immunoglobulin
replacement therapy at home
.

Genetic counselling for the family is important and will be offered by the specialist centre. Prenatal diagnosis is available for future pregnancies if desired and provided that the underlying genetic change can be identified. You can find out more information about genetic testing in the PID UK leaflet Genetic aspects
of primary immunodeficiency.

Other support groups

The XLP Research Trust offers specific support and advice to families affected
by XIAP deficiency and promotes and funds research into the condition. Their
website (www.xlpresearchtrust.org) includes lots more information and patient
stories. Contact them on 01794 521077 or email info@xlpresearchtrust.org.

The Histiocytosis Research Trust offers support and advice to families affected by all types of histiocytosis. Call them on 07551 559 270 or visit their website at
www.hrtrust.org

The leaflet How to become a bone marrow donor can be obtained from the Anthony Nolan Bone Marrow Trust by ringing 0303 3030303 or visiting their
website at www.anthonynolan.org