Sister Stacey M. Sottile: Turning a Lifelong Sickle Cell Journey Into Service
For Sister Stacey M. Sottile, sickle cell disease is not something she learned about from a medical textbook. It has been part of her life since infancy. Diagnosed at just 11 months old, Sister Stacey grew up carrying a challenge that many people around her could not see or fully understand. She was the youngest of seven children and the only one born with sickle cell disease. Her parents were once told by doctors that she might not live beyond her teenage years.
Today, as Sister Stacey approaches 55, her journey has become a testimony of faith, endurance, motherhood, advocacy and service. “I know that there is a God because I’ve called on Him many times, and He’s brought me out of those challenges,” Sister Stacey shared during our conversation. Over the years, she has transformed personal hardship into a mission to educate others and strengthen a community that she once struggled to find for herself.
Growing Up With an Invisible Challenge
Sickle cell disease often does not announce itself through outward appearance. Sister Stacey described it as an “invisible disease” because someone can look healthy while dealing with tremendous complications beneath the surface. Growing up, she experienced moments when other children noticed the yellowing in the whites of her eyes, which can occur with jaundice in people living with sickle cell disease. Like many children who appear different, she sometimes faced teasing.
But the larger struggle was not simply what others could see; it was what they could not see. Sickle cell disease affects red blood cells. Instead of remaining flexible and round, some cells can become rigid and sickle-shaped, interfering with normal blood flow and oxygen delivery. When that happens, severe pain and other serious complications can follow.
For Sister Stacey, that reality has meant years of pain crises, hospital stays, medical appointments and learning how to listen carefully to her body. She described the process in simple terms during our interview: when those abnormal blood cells become trapped and restrict normal circulation, it is almost like a plumbing problem—a blockage has developed, and the body suffers as a result. The pain can be excruciating and, for someone living with sickle cell disease, can become a reality that others may never see.
Watching Treatment Change Over the Decades
As someone who grew up in the 1970s and 1980s, Sister Stacey has personally witnessed changes in how sickle cell disease is understood and treated. She remembers a time when medical professionals did not always understand what to do when someone arrived at a hospital experiencing a sickle cell pain crisis. Today, treatment and medical knowledge have advanced significantly.
Sister Stacey discussed hydration, pain management and oxygen when medically indicated as parts of the supportive care she has experienced during serious episodes. But one treatment in particular has dramatically changed her life: red blood cell exchange therapy, or apheresis.
For approximately a decade, Sister Stacey has undergone the procedure about once a month. During treatment, sickled red blood cells are removed and replaced with healthy donor red blood cells. Before beginning this treatment plan, Sister Stacey said she could find herself hospitalized six or seven times in a year. Since beginning regular apheresis treatments, she says her hospitalizations have fallen dramatically—sometimes to approximately once a year. For Sister Stacey, that change has meant fewer major interruptions from the disease and more time for family, advocacy and everyday life.
Progress Toward a Cure—But the Work Continues
Modern medicine has reached a point that once seemed unimaginable. Bone marrow or stem cell transplantation can potentially cure sickle cell disease in some patients, and newer gene therapies have opened another historic path toward curative treatment. But Sister Stacey made an important distinction during our conversation.
She wants to see what she describes as a “universal cure”—a safe and effective option that can reach far more people living with sickle cell, regardless of age or the damage the disease may already have caused. Not every patient is eligible for every curative therapy. A person's age, overall health, organ function, disease severity and other medical factors can affect whether certain treatments are appropriate. Some procedures can also involve chemotherapy and significant medical risks.
While Sister Stacey recognizes the importance of medical progress, she believes there is much more work ahead. The greater goal is to reach a day when curative treatment is safe, appropriate and accessible to the broad population of people affected by sickle cell disease.
Knowledge Before a Crisis
One of Sister Stacey's strongest messages is education. Sickle cell disease is inherited, and when both biological parents carry sickle cell trait, each pregnancy can carry a 25 percent chance of a child being born with sickle cell disease. That is why Sister Stacey encourages people to know their sickle cell status before starting a family.
A blood test can determine whether someone carries sickle cell trait. That knowledge gives individuals and couples the opportunity to understand their genetics and speak with qualified medical professionals or genetic counselors about what those results may mean for future children. For Sister Stacey, awareness should begin before a family is confronted with a diagnosis because knowledge gives people the ability to make informed decisions.
A Disease That Deserves Greater Attention
Sickle cell disease disproportionately affects people of African ancestry, although it is not exclusive to Black people and also occurs among people from other ethnic and geographic backgrounds. Sister Stacey believes its historical association with Black communities has affected the attention the disease has received.
She spoke candidly about race, health care and what she believes has been an unequal level of public awareness surrounding sickle cell disease. For BLXCR, that makes this conversation especially important because our community cannot advocate for something we do not understand, nor can we properly support families whose struggles remain invisible to us. We cannot wait until sickle cell enters our own household before deciding that education matters.
The Battle Nobody Sees
Some of Sister Stacey's most powerful words were not about hospitals or medical procedures. They were about the mind. Living with sickle cell disease can affect employment, relationships, family responsibilities, mobility and emotional well-being. Sister Stacey explained that some people struggle to maintain employment because repeated hospitalizations and extended periods of illness can be difficult for employers to understand.
There is also the psychological weight of chronic pain. Since entering her 40s, Sister Stacey said pain has become part of her everyday life—not simply something she experiences during a major crisis. “You have to make it intentional to not be saddened and depressed,” she said.
Faith has been central to how Sister Stacey manages those difficult periods, along with positive affirmations, protecting her peace, reducing unnecessary stress and learning not to give life's smaller problems more power than they deserve. She proudly embraces the term sickle cell warrior. Not everyone living with the disease necessarily identifies with that language, and she respects that, but for Sister Stacey, the word represents perseverance and the discipline required to manage a lifelong condition.
Motherhood Gave the Journey Another Purpose
Sister Stacey is the mother of two sons. Her children grew up witnessing realities that many families never have to confront. There were plans that had to be canceled, days when their mother was too sick to participate, hospital stays and moments when sickle cell dictated what the family could and could not do.
Sister Stacey believes those experiences also helped shape her sons. They learned compassion, humility and that time with the people we love should never be taken for granted. Their mother learned the same lesson. Life does not have to produce something spectacular every day for that day to have value. Sometimes being home instead of in a hospital bed is something to appreciate, and simply being present with your children can be enough reason to thank God.
From Isolation to Nearly 6,000 Warriors
As a child, Sister Stacey did not know anyone else living with sickle cell disease. Imagine carrying something so significant and not knowing another person who truly understands what you are experiencing. Eventually, she decided to search for that community herself.
Before social media made connecting almost instantaneous, Sister Stacey picked up the telephone, called directory assistance and asked for a sickle cell organization in her community. That search connected her with advocacy efforts in Queens, New York, and ultimately with longtime advocate Gloria Rochester. Sister Stacey credits that connection with helping empower her to speak publicly about sickle cell.
For years, she had not wanted people to know she had the disease. There was stigma, misconceptions and fear of being viewed differently, but eventually purpose became stronger than silence. Social media later opened an entirely new world and allowed Sister Stacey to connect with people who understood experiences she had spent much of her childhood facing without that kind of peer community.
Sister Stacey became involved with the Sickle Cell Warriors Unity Group, which she helped operate alongside her close friend Davina Daniels. After Sister Davina passed away following her own battle with sickle cell disease, Sister Stacey continued carrying the work forward. Today, with the assistance of other administrators, the group has grown to nearly 6,000 members, connecting people across the United States and around the world. The child who once knew no one else with sickle cell is now helping create the type of community she once needed herself.
Journalism Became Part of Her Assignment
There is another connection between Sister Stacey and BLXCR: she studied journalism. Sister Stacey understood that words could become part of her advocacy. Writing and public speaking gave her tools to educate people about the disease that had affected nearly every stage of her life.
She eventually authored “Guess Who, Mama Pooh?”, a book centered on growing up with sickle cell disease and helping both children and adults better understand the experience. She also hosts “The Advocate: The Power of Your Words,” a monthly program dedicated to sickle cell awareness and advocacy through North Shore TV.
Her work demonstrates why community journalism matters. Sometimes the person best equipped to educate the public is not someone observing the struggle from the outside, but the person who has lived it. Sister Stacey has taken firsthand experience and transformed it into a platform for education, awareness and connection.
What Can the Community Do?
Sister Stacey does not want awareness to end when the interview ends. There are practical ways people can help, and one is donating blood. For patients who require frequent transfusions, finding appropriately matched blood can be extremely important. Increasing the number and diversity of blood donors can strengthen the blood supply available to patients with complex transfusion needs.
People can also support reputable sickle cell organizations, sponsor someone attending a sickle cell conference, help a patient with transportation to medical appointments or simply educate another person about the disease. September is Sickle Cell Awareness Month, while June 19 is World Sickle Cell Day, but Sister Stacey made something else clear: for her, awareness does not belong to one month or one day. It is a responsibility she carries throughout the year.
The Doctors Gave a Prognosis. God Had the Final Word.
Perhaps the most powerful measure of Sister Stacey's journey is the distance between what her parents were once told and the life she has gone on to build. Doctors believed she might not live beyond her teenage years. Decades later, Sister Stacey is approaching 55 after becoming a mother, raising two sons, studying journalism, becoming an advocate, writing a book and building a community that reaches thousands of people.
Doctors have an important responsibility. They study disease, examine evidence, provide treatment and give families the best medical information available to them. But Sister Stacey's faith reminds her that a medical prognosis does not determine the total meaning or purpose of a human life. God is the Author and Architect of creation, and Sister Stacey views the years she has been given as an opportunity to serve others.
Her experiences have become education, and her hardships have strengthened her advocacy. What once made her feel different has become part of what allows her to reach people who may feel alone. Her testimony is not simply about longevity; it is about what she has chosen to do with the life God has given her.
One Warrior's Fight Should Become the Village's Concern
There is a larger lesson in Sister Stacey's testimony. Sickle cell should not become important to us only when somebody in our immediate family is diagnosed. When a Brother or Sister in our community is struggling, we should want to understand that struggle—not from pity, but from responsibility.
We should know why blood donation matters, understand what sickle cell trait means, encourage people to know their status, support warriors and caregivers, and recognize that the person who “looks fine” may be experiencing tremendous pain that no one else can see. We should also continue supporting legitimate research toward safer and more widely accessible curative treatments.
Sister Stacey's story deserves to be heard because she has chosen to turn a deeply personal journey into public service. Her advocacy deserves support because the knowledge she shares may reach a family that has never heard these conversations before. Until the day comes when every person living with sickle cell has access to safe, effective and appropriate curative treatment, this cannot simply be viewed as someone else's concern. It must become our concern—One Village, One Fight.
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