Social Support

The emotional issues associated with Gaucher disease can become especially upsetting for children who are at an age when it is so important "to be like" other children and to "fit in" with their group. They may become frustrated if they do not look like other children, and cannot always do the same things that other children can do. By understanding their child's emotional needs, parents can help the child to deal with the hurt that he or she may be experiencing. Physicians and other community resources can often bring invaluable support to families with chronically ill children. Counseling may be appropriate for children and teenagers suffering from low self-esteem. Sometimes just sharing these concerns with others can be very helpful.

Another challenge faced by Gaucher patients is fatigue that may occur as a consequence of anemia. People who are severely anemic may feel tired, even after a full night's sleep. Some children may lack the energy and stamina to play with other children. They may have difficulty staying alert in the classroom, or concentrating on their homework. It is important for many people with Gaucher disease to include naps in their daily schedules to help combat bouts of fatigue. Ordinary activities that a healthy person can do easily may require more effort for a person with Gaucher disease. Many patients find that they can do what they please if they are careful to pace themselves and ask for help when it is needed.

Depending on the severity of the disease, Gaucher children with reduced agility, with a tendency toward bleeding or bone fractures, or with enlarged spleens may be advised by their physicians to avoid contact sports. Instead they may be encouraged to take up noncontact sports, such as swimming, bicycle riding, or dance. If their physical endurance is low because of breathing difficulties or anemia, "nonaerobic" activities may be preferable. It is important to encourage other activities to help the more severely afflicted group of children with Gaucher disease to develop outside interests and healthy socialization skills. Physicians and families can work together to determine which activities are most appropriate for children with Gaucher disease. Schools are often willing to develop alternate activities and programs for children with physical limitations.

Gaucher Registry

For more than a decade, the Gaucher Registry has been a global resource to the medical and patient communities, helping to improve outcomes in patients with Gaucher disease. Learn more about participating in the Gaucher Registry ยป