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Posts Tagged ‘Lupus Foundation of America’

Lupus Foundation of America Collaborates with Feds to Expand Medical Education

Monday, February 15th, 2010

Lupus Foundation of America Collaborates with Federal Agencies and the U.S. Surgeon General’s Office to Expand Medical Education on Lupus

systemic-lupus-image(Washington,DC) Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities. The meeting, held at the American College of Rheumatology offices in Atlanta, Georgia from January 12–14, 2010, was facilitated by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), and Office of Minority Health (OMH).

According to an LFA survey, a person waits on average three years and visits four doctors before receiving an accurate diagnosis of lupus. More than 90 percent of people with lupus are women, and it is two to three times more common among African Americans, Hispanics, Asian Americans, and Native Americans. Physician and health care provider education is critical to improving the early diagnosis and management of lupus, and ultimately preventing the life-threatening consequences of the disease, particularly among those most at-risk for the disease.

An estimated $1.6 million is available for the initiative entitled, “Eliminating Disparities in Lupus Through Education and Training for Health Professionals” (EDLET/HP), which ultimately seeks to expand and promote the utilization of more comprehensive lupus curricula in medical and nursing schools, and among health care professionals and professional associations.

It is estimated that 80 percent of Americans know little or nothing about lupus. For far too long there have been limited resources to address the patient, public, and professional education gaps in lupus. In part, the first-ever Ad Council public awareness campaign on lupus sponsored by the OWH launched last year began to address the long-standing need to raise awareness and close the gap. The LFA is the Founding Partner on the campaign, “Could I Have Lupus?” which is directed at those most at-risk for developing the disease, and urges individuals who may be experiencing symptoms to ask their doctor about lupus. The EDLET/HP initiative is the health care professional counterpart to the Ad Council campaign.

“The LFA commends the Office of Minority Health and Office on Women’s Health for the foresight in developing these initiatives,” said Sandra C. Raymond, LFA President and CEO. “We also want to thank lupus advocates across the United States for bringing to Congressional attention the urgent need for comprehensive patient, public, and professional education programs on lupus.”

This year, the LFA will be hosting its 12th annual Advocacy Day program in Washington, DC from March 15-16, 2010. It is an opportunity for individuals to educate Members of Congress about lupus, and encourage them to support more funding for lupus research and education programs. To learn more Advocacy Day or to register, visit www.lupus.org/advocacyday.

Hosted Hip-Hop ‘HealthCare Remix’

Wednesday, July 8th, 2009

SEIU, Lupus Foundation, Future of Music Coalition Hosted Hip-Hop ‘HealthCare Remix’ Discussion on Reform

Today hip-hop artists joined workers and a major disease research foundation at the “Healthcare Remix” to discuss healthcare reform and why it is so important that Congress gets it done this year.

Specifically, the event was held in honor of, J-Dilla an influential hip-hop producer and rising artist whose promising life was cut short by complications stemming from his battle with Lupus.

After he lost his insurance coverage, the costs associated with his care reached six-digit levels. In the United States, 60% of uninsured Americans are self-employed or employed by a small business that does not offer health benefits. Participants discussed how healthcare reform can prevent the kind of financial stress and hardship the Yancey family has endured due to the high cost of medical treatment. “The consequences of more delay are grave. Too many Americans are excluded from the life-saving care they need because of prohibitively high costs,” said Dr. L. Toni Lewis President of the Committee of Interns and Residents (SEIU). “J Dilla’s tragic and untimely death should be a lesson to the Congress: We must act now to reform a system that costs too much and covers too few.” The event shed a bright light on the need for reform that does more than just expand insurance coverage. Even with insurance many Americans can’t afford the care they need because of high deductibles or out of pocket costs. And the strain on family budgets gets worse every year. “My son had insurance, and even with that coverage, it wasn’t enough,” said Maureen Yancey, mother of J-Dilla and Chair of the Maureen Yancey Fund. “The costs of J-Dilla’s care spiraled out of control until we just couldn’t afford it anymore. No family should have to face those kinds of bills when they are seeking life-saving treatment. We need reform.”

The day’s events culminated with the fourth annual J-Dilla Tribute and Fundraiser at DC’s Liv Niteclub with special performances by hip-hop artists. The Lupus Foundation and the Maureen Yancey Fund were the beneficiaries of the proceeds. As Congress continues to debate health reform, it is imperative that every community has a voice at the decision-making table. These events raised awareness of the urgency of the problem and urged participants to action by entreating them become informed and contact their Members of Congress.

The Lupus Foundation of America Greater Washington (LFAGW) Chapter, Inc. provides free, current information, education programs and outreach services to improve the quality of lives for people with lupus while also supporting research. Toll-free number in D.C., Md., Va. and W.Va.: 1-888-349-1167 or 202-349-1167. Web site: www.lupusgw.org.

Illinois Lupus Education Seminar Scheduled

Saturday, July 4th, 2009

The Lupus Foundation of America, (Naperville) Illinois Chapter, will host a free educational seminar from 9:15 a.m. to 12:30 p.m. July 11 at the 95th Street Library, 3015 Cedar Glade Drive. This is the first year for the “Living with Lupus: Issues Facing Today’s Young Women” educational seminar, which was created to provide young women with tools to live with lupus effectively. The event will include presentations by Dr. Tammy Utset and Dr. Meenakshi Jolly, followed by a panel discussion featuring young women living with lupus. Space is limited. Register by calling 312-542-0002 or e-mailing sonya@lupusil.org. For more information, visit www.lupusil.org

Swine Flu Precautionary Recommendations for People with Lupus

Thursday, June 25th, 2009

Some Precautionary Recommendations for People with Lupus

The Lupus Foundation of America (LFA) is aware of the concern that people with lupus may have about the recent outbreak of the H1N1 (Swine) Flu. Please know that the LFA is monitoring the situation and consulting with our National Medical-Scientific Advisory Council on the possible impact of this virus on people with lupus.

At this time, the precautionary recommendations for people with lupus are no different than for the general public. However, it is important to note that people with lupus are typically at increased risk for infections, particularly if they are taking medicines that suppress the immune system. Therefore, it is important to be vigilant about following the general precautions.

* Please remember that you should never discontinue medications used to treat your lupus without first consulting with your doctor.*

Below are simple steps people with lupus and their family members can take to lessen the likelihood of contracting Swine Flu.

1. Avoid individuals and family members that are ill and have symptoms such as, a fever (over 100º F), nausea, vomiting, or diarrhea. Specifically, you should limit or avoid face-to-face and personal contact, i.e. hugging, shaking hands.

2. Wash your hands frequently. Public surfaces, including public bathrooms, store countertops, and restaurants can retain the H1N1 virus. Use soapy water for at least 15 seconds, or an alcohol based wipe when out in public.

3. Avoid touching your eyes, nose, or mouth. Germs spread this way.

4. Use the crook of your arm to shield coughs and sneezing. Do not use your hands or handkerchiefs as they carry moisture that spread viruses.

5. Stay home from work or school if you are sick.

While the symptoms of Swine Flu may vary from person to person, according to the World Health Organization, common symptoms include: high fever, cough, and sore throat, symptoms similar to typical influenza, with some patients experiencing diarrhea and vomiting. The cases can rapidly progress to severe and unusual pneumonia.

People with lupus that have a confirmed diagnosis of the Swine Flu can receive treatment with appropriate anti-virals, such as Tamiflu or Relenza. To date, there have not been any major drug interactions between typical lupus medications and to anti-virals effective in treating the Swine Flu.

To receive the latest information and guidelines on Swine Flu visit, http://www.cdc.gov/swineflu/

(Source – Lupus Foundation of America, Inc.)