Self-management

Coping and support

Having any chronic illness can be difficult, but having a rare disease like Gaucher can be even harder. Few people know about the disease, and even fewer understand the challenges you face. You might find it helpful to talk to someone else who has the Gaucher disease or someone who has a child with the disease. Talk to your doctor about support groups in your area.

May 24, 2017
References
  1. Hughes D. Gaucher disease: Pathogenesis, clinical manifestations and diagnosis. http://www.uptodate.com/home. Accessed Jan. 6, 2017.
  2. Gaucher disease (Type 1). Genetic Disease Foundation. http://www.geneticdiseasefoundation.org/genetic-diseases/gaucher-disease-type-i/. Accessed Jan. 6, 2017.
  3. Hughes D. Gaucher disease: Initial assessment, monitoring and clinical course. http://www.uptodate.com/home. Accessed Jan. 6, 2017.
  4. Gaucher disease. Merck Manual Professional Version. https://www.merckmanuals.com/professional/pediatrics/inherited-disorders-of-metabolism/gaucher-disease. Accessed Jan. 6, 2017.
  5. National Library of Medicine. Gaucher disease. Genetics Home Reference. https://ghr.nlm.nih.gov/condition/gaucher-disease. Accessed Jan. 6, 2017.
  6. Hughes D. Gaucher disease: Treatment. http://www.uptodate.com/home. Accessed Jan. 6, 2017.
  7. FDA approves new drug to treat a form of Gaucher disease. U.S. Food and Drug Administration. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm410585. Accessed Jan. 6, 2017.