From Black Panthers to Sickle Cell Warriors — How Communities with Blood Disease Fight On

Aug. 2, 2016 / By

Above: Long Beach resident Kandis Moore with her son last week at a hospital stay prompted by an agonizing sickle cell crisis.

After being hospitalized about 150 times before she was 12-years-old, Kandis Moore began thinking of the hospital as a second home. Today, at age 35, the registered nurse and single mother continues to battle the chronic inheritable condition of sickle cell anemia, which she contracted while still in her mother’s womb.

“The pain is so severe that I will be crying bloody murder every time I have to go to the hospital and I am a full grown woman,” said Moore, a Long Beach resident. She described the pain “like a butcher knife going up and down your shin” or “being shot in same area with a gun too many times.”

One of her crises was so severe that it led to her developing avascular necrosis, the decay of bone tissue from lack of blood, on her right hip, which led to her getting both a hip operation and open heart surgery as an adult.

Sickle cell anemia is a disease characterized by irregularly shaped red blood cells (shaped like a sickle farm tool; pictured below) that blocks blood and oxygen flow in blood vessels, causing serious tissue and organ damage. Most patients experience sudden attacks of severe pain that are accompanied by other symptoms including jaundice, a yellowing of the eyes and skin, bone and joint damage and serious organ infections.

It affects approximately 100,000 Americans, especially African Americans, according to the National Institute of Health. Approximately one in every 365 African Americans are born with this condition and about one in 13 African Americans are born with the sickle cell trait. The illness also affects Hispanics, southern Europeans, Middle Easterners and those with Asian Indian backgrounds.

The disease’s disparate effect on communities of color was widely recognized when The Black Panthers launched the Sickle Cell Anemia Research Foundation in 1971 which later spurred the U.S. government to fund research, according to Alondra Nelson’s book “Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination.”

Today, the search for a cure continues as the condition usually affects all aspects of a sufferer’s personal and work life. Moore described the ways she learned to cope.

For Moore, life was hard until she went to sickle cell camp in San Juan Capistrano, Calif., one summer at the age of seven. There she met others like her. “All my life I never felt like there was anyone that understood me until I stepped out of that bus and saw other kids just as skinny, just as black, and with eyes as yellow as mine,” Moore said.

She found that the disease made its impact on diverse peoples, too. “It was not just African Americans. My best friend there was Hispanic,” Moore said.

It is this social interaction that is the focus of some support groups for sickle cell anemia patients, much needed for a population facing the brunt of stigma and, at times, stereotypes. “There are places that treat us like pain medication seekers and drug addicts,” Moore said. “You go in the hospital and your physician is telling you are not in a crisis. And you are in a little ball crying bloody murder and can’t even walk.”

Moore has found compassionate doctors in Long Beach, an area touted by experts for its supportive caregiving.

“I am getting ready to start a sickle cell parent support group again,” said Dr. Teddi Softley, Pediatric Clinical Psychologist from the Jonathan Jaques Children’s Cancer Center in Long Beach. At the clinic, there are many resources for sickle cell patients and their families.

“We try to promote a better quality of life for sickle cell patients by providing counseling and comprehensive health screenings and clinical care. We often refer patients to support groups, parent support groups and sickle cell camp which is sponsored by Sickle Cell Disease Foundation here in Southern California,” Dr. Softley said.

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Online support has been key in helping sickle cell anemia sufferers cope. Here, a sickle cell anemia patient’s Instagram post.

Online support groups, such as Sickle Cell Warriors, have been effective for Moore and others who help the organization reach out to other patients who may be suffering on their own. Often people in these groups share tips on coping strategies, supplements and improving family support.

Emotional support from her son has been fundamental in helping Moore through the illness, but it’s taken a toll on her boy.

“Imagine this child seeing his mother cry at such a young age and not knowing what to do. My baby would call the paramedics and would bathe me at the age of four,” Moore said. “I would pray every time that the next crisis would not leave my son without a mother. It’s sad that there are not any support groups for kids whose parents go through this. I am my son’s only therapist.”

Dr. Softley said that support should come from not only families, but major institutions. “Schools and employers should give sickle cell patients full accommodations and should be knowledgeable about the disease and should be supportive,” Softley said. “They should have the same opportunities as anyone else and not be discriminated against.”

For those with sickle cell traits, Moore recommends education to prevent passing the disease on to birth children. Parents who each have a sickle cell trait have a one-in-four chance of passing sickle cell disease to their children, according to the Center for Disease Control and Prevention. “I advise anyone with this illness who wanted to have a child to get their blood tested. This illness is preventable,” Moore said. “First, get educated.”

 

From National Institutes of Health (nhlbi.nih.gov)

From National Institutes of Health (nhlbi.nih.gov)

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Lightmary Flores

Lightmary Flores

Lightmary is a Whittier College Student pursuing a major in Public Health. She is actively involved in the student run newspaper, the Quaker Campus, and cultural organizations on campus. As a proud Latina, she loves to sing Mariachi at events and family parties whenever she can.