Volunteer for NIAID-funded clinical studies related to ALPS by going to ClinicalTrials.gov.
View a list of NIH investigators and their contact information.
Individuals with a Fas mutation have a 50/50 chance of passing the Fas mutation on to their children. This chance is the same for each child. Not everyone with a Fas mutation develops ALPS.
Siblings or other relatives who don't have ALPS are still affected by the condition. Some worry that their brother or sister will die. Some think they will develop ALPS because they look or act like their brother or sister. Some children struggle with how much of their parents' time is spent with their sick brother or sister. It is important for families to talk openly about ALPS so that any misconceptions can be explained and feelings can be expressed. Family counseling is often helpful.
Many families say that ALPS has brought them closer together. Family members learn that they can rely on each other for support. Children learn from their parents' open and honest communication, and the experience teaches them how to solve problems.
People taking steroids may gain weight quickly. Some parents talk to teachers about the side effects of steroids in advance so that classmates know what to expect. The swelling is temporary and goes away once the child stops taking the medicine.
People often worry that ALPS can spread to others, but ALPS is not infectious.
Parents of children with ALPS have to work extra hard to develop their children's self-confidence and sense of security. Children and adults with ALPS need to be reminded that they have many positive characteristics.
Some healthcare providers recommend that people with enlarged spleens not play contact sports. When the spleen is large, it is fragile and there is a risk of rupture. NIH encourages use of a spleen guard, which is a piece of fiberglass that is molded to a person's stomach. It is easily wrapped around the stomach and held in place under a shirt.
In general, the spleen guard is worn during any activity with a high risk for stomach injury, such as contact sports. Some people wear spleen guards while swimming, running track, or bicycling.
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Last Updated October 06, 2008