World Sickle Cell Day: Trailblazing researcher battles chronic illness in the lab and at home
World Sickle Cell Day falls on Saturday, June 19 and it sheds light on the struggles and successes of the many people impacted by sickle cell disease (SCD).
As a chronic illness that introduces unwanted pain and severe health complications, like stroke and organ failure, into the lives of its targets, SCD survivors learn to adapt their everyday routines around the demands of their illness.
In so doing, they earn a series of small, and large, victories in their battle against SCD.
For Dr. Lakiea Bailey, an award-winning researcher who was diagnosed with the disease at the age of three, a series of victories throughout her 42-year-long battle against sickle cell have gradually transformed her into an internationally recognized warrior within the SCD community.
In a special interview with CNN, Bailey revealed her secret to success.
She said that her mother, Doris Bailey, didn't allow her to use the illness as an excuse to give up on the things that were important to her. And one of the most important things in Bailey's life was education.
So, she became a voracious reader and student, refusing to give up even when a wave of SCD-related pain would temporarily bring her routine to a grinding halt.
Interested in understanding the functions that caused diseases like sickle cell, Bailey 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 became extremely ill, but pushed through.
"I wrote papers from hospital beds, presented abstracts from hospital beds, won awards from a hospital bed," she said.
She eventually earned a doctorate in molecular hematology and regenerative medicine at Augusta University's Medical College of Georgia.
Bailey says, "My mom has been a major influence on me. She insisted that I continue moving forward, that I be excellent at the things I do, that SCD not be an excuse. And she pushed me to make sure I was taking care of myself. When someone has such an unwavering belief in you, you can’t help but have that kind of faith in yourself.”
Of course, Bailey recalls times when she simply didn't have the strength to do as much as she would have liked.
As a child, for example, her illness forced her to miss weeks out of every school year.
At that time, and currently, Bailey says that when her condition flares up, causing a 'sickle cell crisis,' she, "cannot move," and, "can barely breathe without intense full-body pain in some cases, or it might simply be two arms, one leg, a foot."
And she readily admits that among the many good days are bad ones when she has a hard time catching her breath or talking.
Bailey adds that fatigue is an on-going problem.
"You can learn to be in pain, but when you spend so much of your life absolutely exhausted and no amount of rest can capture or help you feel better," Bailey says. "It throws everything else off."
During physically and emotionally painful SCD-related episodes, Bailey finds strength in allowing herself the freedom to feel whatever she must to get through the moment, while keeping in mind that tomorrow will be a new day.
She says, “I tell myself you don’t have to change today; just commit to changing tomorrow. Allow yourself to be broken, to give up, and then get over it by morning.”
It's with this mindset that the 42-year-old scientist won multiple awards while in school, coauthored several studies published in international scientific journals, founded the Sickle Cell Consortium, become a member of the National Institutes of Health's Sickle Cell Disease Advisory Committee, and went on earn a role as an executive member of the government's Cure Sickle Cell initiative created by the National Heart, Lung and Blood Institute.
Armed with expertise in her field and the heart of a warrior, Bailey is determined to eradicate SCD.
She says, "In the next 5 to 10 years, we are working very hard to make sure that future generations do not have to live with this disease."
In the meantime, she's also working to make rare and expensive treatment options easier for people of all backgrounds to access.
Since children with SCD are at an increased risk of infection and other health problems, early diagnosis and treatment are important. Unfortunately, diagnosis often takes years, and this is a factor Bailey is all too familiar with. When she was a child, it took three long years of struggling for her mother to help Bailey get a proper diagnosis.
These struggles were a key ingredient in the figurative fuel that motivated Bailey to found the Sickle Cell Consortium in 2014.
As a non-profit that advocates for patients and their families, her organization helps families find the care they need, including mental health resources, and shares ways to avoid sickle cell crises.
Bailey truly loves her work and finds a sense of fulfillment in tackling problems related to SCD.
“We reject learned helplessness," Bailey says. "Instead we provide a platform to identify problems, but try not to look to others to fix them. We fix them. Our voice is powerful and it needs to be heard.”
SCD is often described as a painful, genetic disease that impacts patients whose red blood cells are "sickle" shaped and can clump together to impede blood flow to the rest of the body, causing serious problems, including strokes and organ failure.
At this time, the only cure for SCD is bone marrow or stem cell transplant.
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