On Sickle Cell Awareness Day, people with this condition are hoping for change.
Kiesha Tobin of South Los Angeles has had Sickle Cell Anemia since she was two years old.
"With me having sickle cell, it makes it extremely more complicated and difficult," she said,
The condition makes the 44-year-old single mother vulnerable to COVID-19. Yet, as a healthcare worker, she's on the front lines.
Tobin said, "I felt isolated at times, because no one really understood what I was going through having these pain episodes."
Pain crises, as they're called, occur because Tobin's red blood cells are long and C-shaped. They become rigid and cause blockages.
Dr. Rebecca Deans with the West Los Angeles Kaiser Permanente Sickle Cell Center For Excellence in Inglewood said, "Those blockages then prevent the flow of blood. And then those red blood cells are unable to do their job which is carrying oxygen."
She said besides the debilitating pain, sickle cell disease can lead to stroke, gallstones and pulmonary hypertension.
"They are immuno-compromised and a lot of them do have underlying health conditions that can put them at risk," she said.
Tobin said, "I've had several sickle cell attacks to where they were very debilitating for me and I had to learn how to walk again."
Treatments include blood transfusions and a medication called hydroxyurea.
Sickle cell is the most common inherited blood disorder in the U.S occurring in about 1 out of 365 African Americans and more rarely in Latinos. Yet, compared to other inherited diseases such as cystic fibrosis, Deans said sickle cell gets a lot less attention.
"For some reason we don't have the same abundant research and funding," she said.
Another burden patients face: unconscious or implicit bias when seeking care in emergency rooms. Deans said many of her patients are not taken seriously or are considered drug-seekers.
"I would want my patients to be judged by themselves and not by the color of their skin," she said.
Tobin said, "I have this disease, but this disease doesn't have me."
With the recent public outcry for change, Tobin is hoping more money will go to groups like the Sickle Cell Disease Foundation to fund research because her life depends on it.
"I'm optimistic that one day soon that we're going to have a change, we're going to have a cure," Tobin said.
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