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Lupus Disproportionately Affects Black Women

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$32 Billion in Funding Could Raise Awareness

By Shantella Y. Sherman
Special to the NNPA from the Afro-American Newspaper

Lupus, or systemic lupus erythematosus, is a chronic and often debilitating autoimmune disease that impacts more than 1.5 million Americans. Characterized by intense fatigue, exhaustion, joint pain, and memory problems, lupus is three times more common among the Black female populations than any other group. And, while lupus affects women in their childbearing years, the onset of lupus in Black women is earlier and more likely to develop into severe organ problems.

Among health officials lupus has been termed everything from “unpredictable,” to “misunderstood,” and is difficult to diagnose. Additionally, lupus remains a challenge to treat, according to the Lupus Foundation of America, existing outside of the national health dialogue with few awareness efforts in place.  The exact cause of lupus is not known, though researchers believe that there are hereditary genetic markers that keep the immune system from functioning properly.  Additionally, a number of factors can trigger lupus attacks, including viral infections, such as mononucleosis.

No two cases of lupus are alike. Some people develop kidney problems, for example, while others get premature heart disease, and others suffer from strokes or develop lung inflammation.

In recent weeks, lupus activists from around the country visited Capitol Hill, where they successfully lobbied for more than $32 billion in research funding for the National Institutes of Health and to elevate lupus on the nation’s health care agenda.  The funding would not only aid researchers in studying the disease, but also supply a collective guideline for diagnosis, treatment, and outreach that could be utilized by professionals and patients alike.

“Our research has shown that, on average, individuals with lupus suffer symptoms for four or more years and visit three or more doctors before they receive a diagnosis of lupus,” said Sandra C. Raymond, president and CEO of the Lupus Foundation of America. “I’m pleased to see a collaborative effort among advocacy groups, researchers, physicians and leaders in public health and government to provide critical tools that will help reduce the time to diagnosis and improve medical care for people with lupus.”

Dr. S. Sam Lim, associate professor in the Division of Rheumatology at Emory University School of Medicine in Atlanta, Ga., found, in a study of Black women diagnosed with lupus, that those impacted ranged in age from 15-44 and exhibited a range of symptoms from a skin rash to kidney (renal) failure.

“These are young women in the prime of their careers, family, and fertility. This means a severely compromised future, with a disease that waxes and wanes, affecting every aspect of daily living for the rest of their lives,” Lim said. “These data directly reflect the burden of lupus in our community. These are mostly young, minority women who are going to dialysis instead of working and caring for their families.”

And despite the widespread prevalence of lupus, medical research has remained underfunded relative to its scope and devastation making the one in every 250 Black women diagnosed particularly vulnerable to misdiagnoses. Scientists are baffled as to why.  Even with the famous 10-year Lupus in Minorities: Nature Versus Nurture (LUMINA) study, which tracked a sizeable multi-ethnic, multi-regional, and multi-institutional group of lupus sufferers, no consistent cause for the racial disparity was found.  Genetic and ethnic factors were noted, however, to be more important than socioeconomic ones in influencing the disease’s growth.

Lim said several organizations, including the National Lupus Patient Registry, provide tremendous resources to those impacted by the disease. He said that 20 years ago, only 40 percent of people with lupus lived more than three years following diagnosis, with current therapies, most now live a normal lifespan.

“We have to build the next line of research projects to determine the additional ‘whys’ of the disproportionate rates in minorities and poorer outcomes as well as other important questions involving the role of the immune system and genetics,” Lim said.

Bay Area

Mind, Body, and Spiritual Well-Being for Women Addressed in NAACP Forum in Oakland

The Women In The NAACP Oakland Branch is proud to announce the upcoming “Total You – Mind, Body, and Spirit Women’s Health Forum” scheduled for April 27 at Acts Full Gospel Church. Running from 9 a.m.-2 p.m. at 1034 66th Ave., this forum aims to provide an empowering platform for women to engage in discussions, gain knowledge, and access resources pertaining to their health and well-being.

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The panel will address various aspects of women’s health, including physical, mental and emotional well-being and relationships. iStock photo by Jorge Elizaquibel.
The panel will address various aspects of women’s health, including physical, mental and emotional well-being and relationships. iStock photo by Jorge Elizaquibel.

Special to The Post

 The Women In The NAACP Oakland Branch is proud to announce the upcoming “Total You – Mind, Body, and Spirit Women’s Health Forum” scheduled for April 27 at Acts Full Gospel Church.

Running from 9 a.m.-2 p.m. at 1034 66th Ave., this forum aims to provide an empowering platform for women to engage in discussions, gain knowledge, and access resources pertaining to their health and well-being.

The forum will feature renowned experts, healthcare professionals, and advocates from Genentech, John Muir Health, Sutter Health of The East Bay, Kaiser Permanente, and the Alameda County Public Health Department.

Our expert panel will address various aspects of women’s health, including physical, mental, and emotional well-being, and healthy relationships. The forum will encompass a wide range of topics such as breast cancer, menopause, reproductive health, nutrition, mental health awareness, preventive care, and much more.

Participants will have the opportunity to attend informative sessions, interactive workshops, and panel discussions led by experts in their respective fields. Additionally, there will be wellness activities, screenings, and informational booths offering valuable resources and support.

This forum is open to women of all ages and backgrounds, encouraging inclusivity and diversity in the conversation surrounding women’s health. Whether you’re seeking information for yourself, a loved one, or simply looking to connect with other women, this event promises to be enlightening and empowering.

For more information and to register for the Total You Women’s Health Forum, please visit https://www.naacpoakland.org/ or contact Dr. Delores Thompson. WIN chairwoman at (510) 328-3638.

The Women In The NAACP Oakland Branch is dedicated to empowering women, and young teen girls. We look forward to your participation in this important event.

To register, go to https://www.naacpoakland.org/events/the-total-you-womens-health-forum

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Alameda County

Oakland Conducts Its Biennial ‘Point in Time’ Homelessness Count

Oakland, along with other cities in Alameda County, conducted their biennial ‘Point In Time’ census count on Feb. 1 to gain a thorough understanding of the size and dispersion of the homeless population in the region. The Point In Time (PIT) count is federally required by the Housing and Urban Development Department as a requirement to receive funding and resources to tackle homelessness in the area.

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Abandoned vehicles on 24th and Wood St where volunteers conducted the count and surveys. Photo by Magaly Muñoz.
Abandoned vehicles on 24th and Wood St where volunteers conducted the count and surveys. Photo by Magaly Muñoz.

By Magaly Muñoz

Oakland, along with other cities in Alameda County, conducted their biennial ‘Point In Time’ census count on Feb. 1 to gain a thorough understanding of the size and dispersion of the homeless population in the region.

The Point In Time (PIT) count is federally required by the Housing and Urban Development Department as a requirement to receive funding and resources to tackle homelessness in the area.

David Modersbach, Grants Manager of Alameda County Health Care for the Homeless program, said that the methodology this time around was different, as this count had a much more personal “lived experience” aspect that previous counts did not have.

In 2022, the county relied more on statistical extrapolation and assumptions, but this year’s survey questionnaires allowed for details on substance abuse issues, how long someone has been living without proper housing, what resources people are in need of and much more.

“[The PIT count is] a critical opportunity for the county, Continuum of Care, and cities to understand the magnitude of homelessness in Alameda County. [The count] enables us to better allocate resources and implement effective programs to tackle this issue head-on in a compassionate and inclusive way,” Modersbach said.

St. Mary’s Center was one of the many meeting hubs across the county that hosted volunteers and community officials the morning of the count. The organization has been deeply involved in the effort to provide resources for unhoused people and others in need.

St. Mary’s is a nonprofit in West Oakland that helps seniors and preschool families with food and housing. Last year, the organization helped about 50 seniors find housing after they had fallen on hard times.

Sharon Cornu, executive director of St. Mary’s, said a lot of the older couples and individuals that come into the center have borne the brunt of the skyrocketing cost of living in the Bay Area. The most recent influx of seniors St. Mary’s has seen coming in for help has been made up of people who were evicted when the COVID-19-related moratorium on rent payment ended.

“Seniors are the fastest growing segment of the unhoused and the incredibly high cost of housing is driving them to the streets,” Cornu said.

Among the volunteers were workers with Operation Dignity, a nonprofit organization that helps veterans and those living on the street find shelter, transitional housing and supportive services.

“These are our stomping grounds,” Ivan Magana, program manager for Operation Dignity said.

Magana stated that his team was extremely familiar with the people residing in the encampments they were conducting the count in since Operation Dignity made many visits to these areas while doing community outreach. He said they had even informed some of the unhoused people they knew about the count a few days prior so they would not be alarmed when the enumerators showed up early in the morning to conduct the count.

Not everyone got the memo though, as the volunteers encountered an almost violent situation around the 6 a.m.  when a young woman living in a bus yelled at the Operation Dignity workers to leave her alone.

Luckily, the three-year experience Mangana has working with Operation Dignity and his knowledge of therapeutic health services, equipped him with the techniques needed to deescalate the tension. The woman soon realized who the volunteers were and apologized, he said.

Another volunteer and Operation Dignity worker, Yolanda Kirkpatrick, noted that she was initially hesitant because of the early schedule. She felt the time deterred others from participating, too.

Her prediction would come true as the hours went on and they continued to walk along 24th St in downtown Oakland and there was very little activity on the streets.

The volunteers shared similar sentiments. Although the community the people they were engaging for the count and surveys encounter tend to distrust outsiders, the PIT count was necessary for the city to receive the appropriate level of federal funds to address a crisis that is spiraling out of control in California.

A full analysis and report of the count will be made available in the summer.

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Community

For Cervical Cancer Month, Medical Community Focused on Education

January was Cervical Cancer Awareness Month. Physicians, advocates and others in the medical community commemorated the month by raising awareness about a form of cancer they say is highly preventable and treatable. Cervical cancer is caused by a virus called the human papillomavirus (HPV) and it develops slowly over time but can be prevented with proper care in girls as young as 13 years old.

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A Mayo Clinic article published last month stated that Black women are more likely to be diagnosed and die of cervical cancer, compared to White women in the U.S. 2,000 Black women are diagnosed every year with cervical cancer and 40% die as a result.
A Mayo Clinic article published last month stated that Black women are more likely to be diagnosed and die of cervical cancer, compared to White women in the U.S. 2,000 Black women are diagnosed every year with cervical cancer and 40% die as a result.

By Magaly Muñoz

January was Cervical Cancer Awareness Month.

Physicians, advocates and others in the medical community commemorated the month by raising awareness about a form of cancer they say is highly preventable and treatable.

Cervical cancer is caused by a virus called the human papillomavirus (HPV) and it develops slowly over time but can be prevented with proper care in girls as young as 13 years old.

Sonia Ordonez, an OBGYN and gynecology surgeon at Kaiser Permanente, stated that as soon as people with cervixes reach the maturity reproductive age, they should start taking preventative measures like getting the HPV vaccine. The vaccine involves a series of two-doses for people aged 9 through 14 or three-doses for people 15 through 45 years old.

“I see a lot of young women who can’t remember or may not have gotten [the vaccine] when they were younger, or maybe got one, but we can give them the series of vaccines and restart at any point in time,” Ordonez said.

She said that cervical cancer is not the only cancer caused by HPV. Strains of the virus can also lead to throat, anal and penile cancers.

Screening is also an effective way to check for cervical cancer and should be done every three years after someone turns 21, doctors recommend. It is best to start as early as possible to catch occurrences early.

Ordonez said that this cancer is also more likely found in people of color and has led to more deaths overall.

A Mayo Clinic article published last month stated that Black women are more likely to be diagnosed and die of cervical cancer, compared to White women in the U.S.

2,000 Black women are diagnosed every year with cervical cancer and 40% die as a result.

“This disparity is not due to genetic differences among White, Black or Hispanic women, but rather related to systemic racism, access to healthcare and socioeconomic factors,” Dr. Olivia Cardenas-Trowers, a Mayo Clinic urogynecologist, said in the article.

Ordonez stated that immigrant women are also highly susceptible to the cancer, as many Latin American countries may not have accessibility to screenings or lack of insurance makes it harder for them to get tested.

Hispanic women are 40% more likely to be diagnosed with cervical cancer, and 30% more likely to die from it, as compared to non-Hispanic White women, according to the Office of Minority Health.

Family medicine physician, Joy Anyanwu, stated that the pandemic contributed to hesitancy about getting cervical cancer screenings among some women. Other factors are people’s aversion to vaccines, parents not wanting to believe that their children are or will become sexually active, and doubt about the overall effectiveness of the vaccine.

“The vaccine is very safe — over 97% effective in preventing cervical cancer,” Anyanwu said. “Even if you aren’t having sex, the earlier you start would actually help.”

Anyanwu said she understands that parents might not want to ask questions about their children’s reproductive health, but it’s a mindset that can be a barrier to having important conversation about prevention or care.

To keep families their families and communties healthy, the doctor emphasized that people should prioritize keeping up with their vaccine series and going to screenings every year.

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