Beta thalassemia Health Article

Social and lifestyle issues

Children with beta thalassemia major that is not diagnosed and treated early may develop changes in the bone structure of the face due to the expansion of bone marrow. Supportive counseling may benefit children who feel inadequate or refuse to participate in social activities due to their appearance.

Adolescents may require counseling concerning the effects that blood transfusions and iron chelation therapy may have on their social lifestyle.

Parents may need to seek counseling or attend support groups that focus on the time demand and lifestyle changes of caring for a child diagnosed with beta thalassemia.

Prognosis

Prognosis for beta thalassemia is good for individuals diagnosed early and those who receive proper treatment. Children with beta thalassemia major live 20-30 years longer with treatment by blood transfusions and iron chelation therapy.

BOOKS

Bowden, Vicky R., Susan B. Dickey, and Cindy Smith Greenberg. Children and Their Families: The continuum of care. Philadelphia: W.B. Saunders Company, 1998.

"Thalassemias." In Principles and Practice of Medical Genetics, Volume 2, edited by Alan E.H. Emery, MD, PhD, and David L. Rimoin, MD, PhD. New York: Churchill Livingstone, 1983.

Thompson, M.W., R. R. McInnus, and H. F. Willard. Thompson and Thompson Genetics in Medicine, Fifth Edition. Philadelphia: W.B. Saunders Company, 1991.

PERIODICALS

Angelucci, E., et al. "Hepatic iron concentration and total body iron stores in Thalassemia Major". The New England Journal of Medicine 343, (2000): 327-331.

Mentzer, W. C., et al. "Prospects for research in hematologic disorders: sickle cell and thalassemia". The Journal of The American Medical Association 285 (2001): 640-642.

Olivieri, N. F. "The Beta Thalassemias". The New England Journal of Medicine 341 (1999): 99-109.

Olivieri, N. F., et al. "Treatment of thalassemia major with phenylbuyrate and hydroxyurea". The Lancet 350 (1997): 491-492.

ORGANIZATIONS

Children's Blood Foundation. 333 East 38th St., Room 830, New York, NY 10016-2745. (212) 297-4336. cfg@nyh.med.cornell.edu.

Cooley's Anemia Foundation, Inc. 129-09 26th Ave. #203, Flushing, NY 11354. (800) 522-7222 or (718) 321-2873. <http://www.thalassemia.org>.

March of Dimes Birth Defects Foundation. 1275 Mamaroneck Ave., White Plains, NY 10605. (888) 663-4637. resourcecenter@modimes.org. <http://www.modimes.org>.

National Heart, Lung, and Blood Institute. PO Box 30105, Bethseda, MD 20824-0105. (301) 592-8573. nhlbiinfo @rover.nhlbi.nih.gov. <http://www.nhlbi.nih.gov>.

National Organization for Rare Disorders (NORD). PO Box 8923, New Fairfield, CT 06812-8923. (203) 746-6518 or (800) 999-6673. Fax: (203) 746-6481. <http://www.rarediseases.org>.

Laith F. Gulli, MD and Tanya Bivens, BS