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World sickle cell day 2021: scientist fights to heal herself and others

As a child, she missed weeks of every school year because of sickle cell anemia, a painful genetic disease that is believed to impact 100,000 Americans.

Patients’ red blood cells are shaped like a “sickle” and can clump together to prevent blood flow to the rest of the body, causing serious problems including strokes and organ failure.

As a studious young woman aspiring to be normal, she hid her condition from her teachers when she went to college. But she says it only made her life more difficult.

When the disease flares up, an event known as a sickle cell crisis, “you can’t move, you can barely breathe without severe pain throughout your body in some cases, or it may just be two arms, one leg. , one foot, ”the 42-year-old man told CNN.

Bailey has undergone hundreds of surgeries, blood transfusions, and hospitalizations over the course of his life. As a child, she remembers being afraid of the night because that is when her sickle cell attacks happened most often.

“I thought there was something in the hours between 2 and 5 in the morning that was just dangerous,” she said.

From patient to doctorate

Bailey’s mother told her that because she was sick she always had to work hard to get ahead.

“I often studied during breaks and liked it,” she said. “I was a huge nerd who read medical dictionaries for fun.”

Curious about what causes diseases like hers, she excelled in school and earned a bachelor’s degree in biochemistry and molecular biology from Agnes Scott College in Decatur, Georgia. While working on her doctorate, she fell extremely ill. Her courage helped her get through it.

“I wrote articles from hospital beds, presented summaries of hospital beds, won awards for a hospital bed,” she said.

She eventually earned a PhD in Molecular Hematology and Regenerative Medicine from Augusta University Medical College in Georgia.

Bailey won several awards during her studies, including the Fisher Scientific Award for Overall Excellence in Biomedical Research, and she has co-authored several studies published in international scientific journals.

“I think this knowledge, this sickle cell disease has kind of always stood in the shadows, made me run and move on.”

Creation of the Sickle Cell Disease Consortium

In 2014, Bailey founded the Sickle Cell Consortium, a nonprofit that advocates for patients and their families. For her, it’s personal – her mother struggled for three years to get a correct diagnosis of young Bailey.

The organization helps families find the care they need, including mental health resources, and shares ways to avoid sickle cell crises. It also informs families about the latest treatments and clinical trials.

“I had this rather ambitious goal of creating a mini-United Nations where all the different sickle cell organizations and those responsible for patient care could come together on one site and identify the main needs and gaps.”

World sickle cell day 2021: scientist fights to heal herself and others
The group organizes Sickle Cell Warriors Conventions, national community gatherings organized by patients and caregivers. They run workshops, listen to leaders and scientists, and award more than 100 scholarships, making connections around their common challenges.

In the United States, blood disease primarily affects people of African or Caribbean descent. Worldwide, it also appears in people living in Greece, Italy, and India.

Today, the only known cure is a bone marrow transplant. But the procedure carries significant risks and patients have to find a suitable donor, which is difficult.

“The registry needs more black and brown people who are willing to save the lives of other black and brown people,” Bailey said.

Finding a bone marrow donor

Bailey is fighting his own personal battle to find a donor. She had a match but it failed.

Sickle cell disease affected most of her organs. She suffered several strokes and had to undergo a complete hip replacement.

There are good and bad days when she has trouble catching her breath or speaking. But fatigue is the biggest problem.

“You can learn to suffer, but when you spend so much of your life absolutely exhausted and no amount of rest can capture you or help you feel better, it disrupts everything else.”

Meanwhile, Bailey continues to fight, helping to find a cure.

She helps pharmaceutical companies work on gene therapy. She sits on the National Institutes of Health Sickle Cell Advisory Committee and is an executive member of the government Cure Sickle Cell initiative created by the National Heart, Lung and Blood Institute.

Sickle cell disease inflicts damage on many fronts. But this tough scientist grows back in so many ways – and she’s not alone.

“Over the next 5 to 10 years, we are working very hard to ensure that future generations do not have to live with this disease. “


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