At School
Understanding how schools are organized can decrease the frustration parents may experience. Much of the behavior of school personnel relates to how the school is organized and is not directly related to parents or children. Parents of children with Gaucher disease must often ask school personnel to do something different from the norm, such as leaving school for doctor appointments. Give them time to adjust to your requests. See how you can support them as they adjust to the new expectations you are requesting.
Parents frequently are in a position of asking teachers to do things that go against the norm of the school. Without approval from their supervisors, teachers may not be able to make changes that both parents and teachers are recommending. Teachers’ superiors may not always be knowledgeable about the needs of students with Gaucher disease. It is important to remember that this usually isn’t personal to the parent or to the child, but is a result of the way schools are organized. The job of parents is to understand and then help the school system plan for developing a special program for their child.
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Diagnosis and Testing
Doctors diagnose Gaucher disease by using a simple blood test called an enzyme assay. The assay for Gaucher disease measures activity levels of the enzyme glucocerebrosidase in white blood cells or skin cells. Individuals who are affected with Gaucher disease will have very low levels of enzyme activity. However, the assay cannot determine disease severity. Learn more in Diagnosing and Testing »
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 »