Rare disease needs increased awareness

Education the difference between life and death

Although National Aplastic Anemia Awareness Week is Dec. 1-7, 2002, Marilyn Baker, MS, executive director of Aplastic Anemia & MDS [myelodysplastic syndromes] International Founda-tion in Annapolis, MD, won’t send posters and brochures to health care facilities unless they are requested, because most never are used. Many fail to recognize the need for education about aplastic anemia because it is a rare blood disorder, with about 60,000 new cases a year.

Yet the fact that it is rare is the very reason it needs more publicity. There are several reasons why education is needed, says Baker.

"Blood and platelet donations are constantly needed to keep these patients alive. Many patients will pass away if they don’t have platelet and blood transfusions," she says. This chronic condition occurs when a person’s bone marrow stops making enough red and white blood cells and platelets. Reduced red cell production causes anemia, infections occur more often due to a reduction in white cells, and reduced platelet production results in anemia.

Platelet donations are particularly important. "Everyone donates blood, but few people donate platelets," explains Baker. There is more of a time commitment to platelet donations because the process takes about an hour and a half.

It is vital for people who suffer from aplastic anemia and their family members to connect with one another. Providing networking opportunities is one of the main services of the foundation. "Because there is no cure and treatment often is experimental, patients want to talk to other families," explains Baker. It is difficult to make a decision about treatments that are not considered standard.

Also, patients with this rare disease that no one has heard about feel isolated, and they don’t get the community support that people with leukemia or breast cancer receive, she says.

When a person develops aplastic anemia, there are many lifestyle changes that his or her family must learn to cope with. Frequently, families must travel for treatment because local physicians do not know how to treat this rare condition.

The symptoms of aplastic anemia can be debilitating as well. For example, as a result of low red blood cells patients experience fatigue and must undergo blood transfusions. The risk of infection increases when white blood cells are low and cannot be transfused. Abnormal bruising and bleeding occur when platelets are low, and again a transfusion is necessary.

Telltale signs of aplastic anemia would be bruising your hand while opening a pickle jar, says Baker. "Sometimes, child abuse is suspected because children have abnormal bruising in strange areas," she says. Lingering colds or sickness can be a symptom, as can excessive nose bleeds or a paper cut that won’t heal.

Age, gender, and race are not a factor in contracting this rare disease. It may be caused by injury to the bone marrow by toxins, chemicals, or viruses. The general public needs to understand that it is rare for people to develop this disease; therefore, researchers suspect that genetic factors may make certain people more susceptible, according to the Aplastic Anemia & MDS International Foundation. "The general public needs to know that the disease is not contagious," says Baker.

More research is needed to learn more about aplastic anemia and develop effective treatments. Publicity helps to boost funding for research, she adds.

Some famous people have died of aplastic anemia, but because the disease is rare, reporters have simply stated the cause of death as a blood disease. These people include Eleanor Roosevelt and Madame Curie.

A good way to get the word out during National Aplastic Anemia Awareness Week is to organize a blood or platelet drive, says Baker.

Source

For more information about aplastic anemia or National Aplastic Anemia Awareness Week, contact:

  • Marilyn Baker, MS, Executive Director, Aplastic Anemia & MDS International Foundation, P.O. Box 613, Annapolis, MD 21404-0613. Telephone: (800) 747-2820 or (410) 867-0242. E-mail: info@aamds.org. Web site: www.aamds.com.