World Sickle Cell Disease 2021: Scientists Fight for Treatment of Theirself and Others

The patient’s red blood cells are in the shape of a “sickle” and can aggregate to block blood flow to other parts of the body, causing serious problems such as stroke and organ failure.

As a hard-working young woman who longs to be normal, she hid her condition from her professor when she went to college. But she says it only made her life more difficult.

When the condition, known as sickle cell disease, worsens, he says, “I can’t move, and in some cases I can hardly breathe without severe general pain, or I can just have both arms, one leg, and legs.” .. The 42-year-old told CNN.

Bailey has endured hundreds of surgeries, blood transfusions, and hospitalizations throughout her life. She remembers when she was a kid, she was afraid of the night when sickle cell disease struck most often.

“I thought it could be dangerous between 2am and 5am,” she said.

From patient to PhD

Bailey’s mother told her that she was ill and had to work hard all the time to move on.

“I studied hard during the break and enjoyed it,” she said. “I was a huge geek who enjoyed reading medical dictionaries.”

Interested in the causes of illnesses like her, she was an excellent school student and earned a bachelor’s degree in biochemistry and molecular biology from Agnes Scott College in Decatur, Georgia. While earning her PhD, she became very ill. Her grit helped her pierce.

“I wrote a treatise from the hospital bed, presented a summary from the hospital bed, and won the award from the hospital bed,” she said.

She finally received her PhD in Molecular Hematology and Regenerative Medicine from Augusta University, Medical College of Georgia.

While in school, Bailey received several awards, including the Comprehensive Biomedical Research Award, and co-authored several studies published in international scientific journals.

“I think the knowledge that sickle cell disease was always waiting in the shadows made me move forward and keep moving forward.”

Establishment of sickle cell consortium

In 2014, Bailey Sickle cell consortium, A non-profit organization that defends patients and their families. It’s personal to her-her mother struggled to get a proper diagnosis of young Bailey for three years.

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

“I have this fairly ambitious goal of creating a mini-UN where all the leaders of various sickle cell tissues and patient caregivers can come together in a single level area to identify key needs and gaps. Was. ”

The group holds sickle cells “Warrior Tournament” A national community gathering organized by patients and caregivers. They hold workshops, listen to leaders and scientists, offer over 100 scholarships, and connect common challenges.

In the United States, blood disorders primarily affect people of African or Caribbean descent. It is also found in people living in Greece, Italy and India all over the world.

The only known treatment today is bone marrow transplantation. However, this procedure carries significant risks and requires the patient to find a matching donor, which is difficult.

“ Registry We need more black and brown people who are willing to save the lives of other black and brown people, “said Bailey.

Find a bone marrow donor

Bailey is fighting her own personal battle to find a donor. She played one match but failed.

Sickle cells affect most of her organs. She has multiple strokes and needs total hip arthroplasty.

There are good days and bad days when she has a hard time holding her breath and talking. But fatigue is the biggest problem.

“You can learn to feel pain, but when you spend much of your life completely exhausted and the amount of rest can’t help you catch or feel good- It throws away everything else. ”

Meanwhile, Bailey fights and helps find a cure.

She helps pharmaceutical companies work on gene therapy. She is a member of the National Institute of Health’s Sickle Cell Disease Advisory Board and an executive member of the Government’s Treatment Sickle Cell Initiative created by the National Institute of Cardiopulmonary Blood.

Sickle cells are harmful in many ways. But this tough scientist is pushing back in so many ways-and she’s not alone.

“In the next five to ten years, we are working very hard to ensure that future generations do not have to live with this disease.”

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