What is included in patient education about cartilage-hair hypoplasia (CHH)?

Updated: Aug 06, 2019
  • Author: Alan P Knutsen, MD; Chief Editor: Harumi Jyonouchi, MD  more...
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Answer

Patients and their families should be educated regarding the problems associated with cartilage-hair hypoplasia. In particular, provide information concerning the immune deficiency, immune system, and immune defect. The family should be taught the risks of infections, how to recognize signs and symptoms of infections, and the importance of prompt treatment of infections.

An excellent resource for parents and patients with primary immunodeficiency disorders is the Immune Deficiency Foundation (IDF). This is a foundation for the public started by Marcia Boyle in Baltimore, Maryland, with a medical advisory board consisting of recognized experts in the field of immunodeficiency. Educational material for families can be obtained from the IDF. Many cities throughout the United States have local chapters.

Immune Deficiency Foundation

40 W. Chesapeake Avenue, Suite 308

Towson, MD 21204

Tel: 800-296-4433; Fax: 410-321-9165

Email: idf@primaryimmune.org

An additional resource for families with children with primary immunodeficiency disorders is The Jeffrey Modell Foundation.

Jeffrey Modell Foundation

747 3rd Avenue

New York, NY 10017

Tel: 1-800-JEFF-855


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