Just diagnosed?

If you have just learned that you, your child, a relative, or a friend has Gaucher disease, the odds are that this is the first time you have ever heard of this disorder. Gaucher disease is not very common, and until recently it has received very little public attention.

Uncertainty can breed concern and the anxiety many individuals have about the disease is due in part to a lack of information. In fact, since Gaucher disease was first identified over 100 years ago, much has been learned about the nature of the disease, as well as how the syptoms and psychological effects can be managed. Research conducted over the past 30 years has also led to new approaches to treatment that can reverse the major symptoms of the disease.

Gaucher disease (pronounced go-shay disease) is an inherited disorder. Symptoms of the disease can vary from very mild to severe, and they can appear at any time, from infancy to old age. In affected individuals, however, the genetic cause is present from the time of conception.

Individuals of any ethnic or racial background, including blacks and Hispanics, may be affected but it is more prevalent among people of Jewish origin.

This section is designed to guide you around the parts of our website that will provide you with some information about Gaucher disease and answer some of the common questions that we get asked.

The five steps

1. QuestionsThis section outlines how the disease is diagnosed and what patients can expect after being diagnosed with Gaucher disease.

2. PublicationsThis section provides links to useful publications on Gaucher disease.

3. Living with Gaucher diseaseThis section provides information on the emotional and social aspects of Gaucher disease.

 4. Support
This section outlines what support is available to patients, their family and friends.

5. Get involved
This section outlines the various ways to get involved with the Gauchers Association