'African Americans and Lupus: Invisible No More:' Key Topic at Congressional Black Caucus Annual Legislative Congress

[Guest guest]

'African Americans and Lupus: Invisible No More:' Key Topic at Congressional

Black Caucus Annual Legislative Congress

Thursday September 9, 8:31 am ET

WASHINGTON, Sept. 9 /PRNewswire/ -- The urgent need for more education and

research to address the fact that African American women are

disproportionately impacted by the autoimmune disease lupus will be the

focus of a forum on Friday, September 10 at the 34th Congressional Black

Caucus Annual Legislative Conference. To be held in Washington, DC, the

Forum, " African-Americans and Lupus: Invisible No More, " is sponsored by

Congressman Edolphus " Ed " Towns (D-NY) and co-sponsored by the Lupus

Research Institute National Coalition.

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Panel discussions will feature leaders in the lupus community from medical,

patient, legislative and advocacy arenas. The Forum, to be moderated by

Lucille C. Norville , MD, President of The Cave Institute and Past

President of the National Medical Association, will educate, raise issues,

and most important, issue an urgent " Call to Action " to Congress to promote

a major educational campaign on health disparities in lupus and to increase

funding for lupus research.

Dennis, MD, Director of Clinical Care and Training at the National

Institute of Arthritis and Musculoskeletal Diseases (NIH), will provide an

overview of lupus, a complex autoimmune disease that affects 1-1.5 million

Americans, 90 percent of whom are women. In lupus, the body's immune system,

which normally functions to protect against foreign invaders, becomes

hyperactive, forming antibodies that attack normal tissues and organs,

including the skin, joints, kidneys, brain, heart, lungs and blood. Some

common symptoms include painful and swollen joints, fevers, prolonged

fatigue and skin rashes.

Lupus: The African American Experience

Lupus is three times more common in black women than in white women. And,

while lupus affects women in their childbearing years, the onset of lupus in

African American women is earlier and causes severe organ problems. African

American people with lupus have a higher frequency of neurological problems

such as seizures, hemorrhage and stroke than other patient populations.

Reveille, MD, of the University of Texas Health Science Center and lead

investigator of the landmark study LUMINA (Lupus in Minorities: Nature vs.

Nurture), will provide insight into these and other issues on racial

disparities in lupus.

Vivian Pinn, MD, Director of the NIH Office of Research on Women's Health,

will focus on the issue as it relates to current and future directions in

women's health research.

Patient and Family Perspectives

Two women will offer perspectives on the impact of lupus on the patient and

family. Judith of Buffalo, New York, who has lupus, has been

proactive for the past 14 years educating those affected with the disease as

well as the medical community. Her main focus in education has been in the

African American and Hispanic communities. Another woman, Myna Majors of New

York City, will speak about her daughter's struggle with lupus and the

devastating effect of this disease on her family. A special feature of her

presentation will be a performance of poetry reading, a technique she

developed to help others understand what lupus is all about.

Community Awareness and Education

Frances Ashe-Goins, RN, MPH, Deputy Director of the U.S. Department of

Health and Human Services (DHHS) Office on Women's Health, will discuss the

need for community education and outreach on lupus in the African-American

community, and will describe programs and initiatives of the Office on

Women's Health. Margaret Dowd, Executive Director of the S.L.E. Lupus

Foundation in New York, will describe the New York City Lupus ative, a

collaborative program consisting of an integrated network of health and

supportive services to improve the care and quality of life for people with

lupus and their families in underserved New York City communities.

The Forum will conclude with a " Call to Action, " issued by former

Congresswoman Meek, urging the Federal Government and the United

States Congress to make a serious and ongoing commitment to fight this

debilitating disease.

The Congressional Black Caucus is a non-partisan, non-profit, public policy

institute formed in 1976 to stimulate education and discussion among African

Americans about legislative and public policy issues relevant to this

community. The annual legislative conference draws close to 30,000 people.

The Lupus Research Institute National Coalition is a new advocacy network of

state and local lupus organizations and other supportive groups united to

promote increased education and awareness of the seriousness of lupus and

the need for increased research.

The Lupus Research Institute acknowledges with gratitude support for this

Forum from La Jolla Pharmaceutical Company.

Source: Lupus Research Institute