Published Feb 29, 2024

TLC’s Tionne ‘T-Boz’ Watkins Didn’t Talk About Living With Rare Chronic Illness, Sickle Cell Anemia, Until Adulthood

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What Causes Sickle Cell Disease (SCD)

Singer Tionne Watkins, 53, popularly known by her stage name “T-Boz” from the iconic 1990s music trio “TLC” has been living with a rare chronic illness and blood disorder called sickle cell anemia since she was a child. It wasn’t until she was an adult that she began opening up about the illness and published her memoir, “A Sick Life: TLC ‘n Me: Stories from On and Off the Stage.”
Sickle Cell Disease (SCD) is an inherited blood disorder, meaning it is a condition that is passed down through families.
The condition is characterized by abnormal hemoglobin (a protein that carries oxygen) in the blood. Normal red blood cells are round and pass through vessels easily, but SCD causes the cells to change shape (to a C or sickle shape).
The sickle cells tend to die off quicker, can disrupt blood flow because they may stick rather than move smoothly through vessels, and can damage organs.
Handling a rare disease can be very overwhelming, but SurvivorNet’s experts have guidance on how to seek out specialized treatment providers.
More common diseases might not require the same degree of specialized attention, but finding doctors with specific expertise may be necessary for rare ones. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for your rare disease. These databases can also help you find doctors who specialize in your disease.

Singer Tionne Watkins, 53, popularly known by her stage name “T-Boz” from the iconic 1990s music trio “TLC” has been living with a rare chronic illness and blood disorder called sickle cell anemia since she was a child. It wasn’t until she was an adult that she began opening up about the illness.

Watkins, a mom of one, recently published a memoir about living with the disease in the book, “A Sick Life: TLC ‘n Me: Stories from On and Off the Stage.”

Seeing Watkins open up about her health condition shows us how strong and determined she’s been throughout her life, despite the debilitating pain she’s experienced from the blood disorder, something many people battling disease can look up to.

The Amazon description of the book says it “chronicles Tionne’s journey from a sickly young girl in Des Moines who was told she wouldn’t live to see 30 through her teen years in Atlanta to how she broke into the music scene and became the superstar musician and sickle-cell disease advocate she is today.

“Through Tionne’s tough, funny, tell-it-like-it-is voice, she shares how she found the inner strength, grit, and determination to live her dream, despite her often unpredictable and debilitating health issues. She dives deep into never-before-told TLC stories, including accounts of her friendship with Lisa ‘Left-Eye’ Lopes and her tragic death. Tionne’s unvarnished discussion of her remarkable life, disease, unending strength, and ability to power through the odds offers a story like no other.

Watkin’s writes in the memoir, “Early on, it [sickle cell anemia] wasn’t managed at all. That’s why I ruined every tour and got sick every time.”

Sickle cell disease (SCD) is an inherited blood disorder, meaning the condition is passed down from parents to their children. It impacts more than “100,000 people” in the U.S. according to the National Heart, Lung and Blood Institute.

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Speaking to ABC’s GMA in an earlier interview about the memoir, Watkins said, “The title means so much for me. It’s a strong word, ‘a sick life,’ ’cause I’ve had it all. I was told I would never live past 30; I would be disabled my whole life and never have kids.

“But, no. Like I’ve traveled the world in TLC. I’ve worked with Michael Jackson.”

Watkins, who recounted spending months recovering in the hospital after her intense tour schedule, explained sickle cell disease as, “The easiest way to describe it is oxygen isn’t getting to our vital organs. So, if it’s your legs, you can’t walk. Your arms, you can’t even hold a pencil and write … I went through so much.”

What made that time in her life even more difficult was when her fellow TLC singer, Lisa “Left Eye” Lopes died in a car accident while overseas.

“That was one of the hardest times in my life. Lisa died like three, four days after I got out of the hospital. So, I was frail and 90 pounds. Which made me sick again. I’m like, ‘What’s goin’ on?’ Like, soon as something was good, it’s just all, everything was just … it was bad,” she said.

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Then, in 2006, Watkins was diagnosed with a benign brain tumor. According to BlackDoctor, an African American health and wellness magazine, she underwent a “seven-hour surgical procedure.”

The singer kept the diagnosis private until 2010 while filming the reality business competition show “Celebrity Apprentice.”

During an interview with CNN, Watkins also revealed doctors had told her she would never be able to have children. But she went on to have a beautiful baby girl in 2000 and a little boy in 2016.

“You don’t want your kids to know you think you might die. I don’t want my daughter or son to feel my pain,” she said. “I’ve got to keep a normal face on.”

Fast forward to 2022, Watkins opened up about how she uses CBS to cope with sickle cell anemia.

She told ESSENCE, “I was able to make it through four tours without getting sick. And everybody who’s been on tour with TLC knows that’s astronomical for me, honey, because I am known for messing up a tour.”

What Is Sickle Cell Disease?

Sickle cell disease is a group of blood disorders that can cause issues with circulation, leading to intense pain and organ damage.

In the U.S., most people affected by sickle cell disease are diagnosed with the genetic disorder shortly after birth because newborns are usually tested for sickle cell disease.

“The primary problem with this disease is an abnormal hemoglobin,” Dr. Sophie Lanzkron, Director of the Sickle Cell Center for Adults at Johns Hopkins, previously told SurvivorNet.

Hemoglobin protein in the red blood cells that carry oxygen throughout the body.

WATCH: Treating Sickle Cell Disease

“The hemoglobin molecules and the red cells stick together and when they stick together, they form this polymer, this stiff thing inside the red cells that’s what causes the red cell to change its shape,” Dr. Lanzkron continues.

Normal red blood cells are round, but in sickle cell patients, the red blood cells are shaped like a “C, or a sickle farm tool (hence, the name).

The change in shape affects the circulation of these critical red blood cells, meaning proper oxygen does not reach tissues. The result of this process can mean excruciating pain and organ damage for patients, among other symptoms.

Some treatment for sickle cell disease depends on the severity of your symptoms, according to National Heart, Lung, and Blood Institute. Options include:

Pain medication
Blood transfusions help patients with low red blood cell count.
Infection-fighting medicines like penicillin
Medications that prevent the sickling of red blood cells. These medicines may come with side effects such as headache, diarrhea, nausea, fatigue, and fever.
Over-the-counter medicines exist to help manage the side effects.

“A blood and bone marrow transplant is currently the only cure for some patients,” according to the NHLBI.

Where Sickle Cell Disease Gets Its Name

“Sickle” cell disease refers to the changed shape of red blood cells.

Blood cells are typically shaped like a disc, but with this disease, they change into the shape of a C. It resembles the curved farming tool called a sickle, and that is where it gets its name.

If you are diagnosed with SCD, you may hear a doctor use the term “sickling.” This refers to the process of red blood cells changing shape.

“That’s what we think of as sickling when those red cells change their shape,” Dr. Lanskron explains.

Complications of sickle cell disease can result from poor circulation.

When the cells change shape and become stiff and sticky, they no longer move easily through blood vessels. They may get stuck and block blood flow. These cells tend to die off quickly, and proper oxygen does not reach tissues.

This can lead to severe pain known as pain crises. It can occur in various parts of the body, such as the chest, abdomen, bones and joints.

Patients can also experience:

Low red blood cell counts (anemia).
Jaundice (yellowing of the skin).
Swelling of hands and feet
Frequent infections
Organ damage

Sickle cells can damage the spleen, which normally helps filter infections out of the blood. Without a healthy, functioning spleen, patients are more at risk for infections.

Newborn Screening for Sickle Cell Disease

Babies are typically screened for sickle cell disease as newborns.

“In the United States, we have newborn screening in all states … so most people who are born with sickle cell disease are identified shortly after birth,” Dr. Sophie Lanzkron, Director of the Sickle Cell Center for Adults at Johns Hopkins, told SurvivorNet in an earlier interview.

“It’s really important that [sickle cell disease] gets identified at birth because if you have the homozygous form of sickle cell disease, the baby is at an increased risk of having a life-threatening infection,” Dr. Lanskron adds.

These families will need to be taught how to treat their child and what signs to look out for to ensure their baby stays in good health, Dr. Landkron says.

What Are the Signs of Sickle Cell Disease in Babies?

Babies are born with a form of hemoglobin called fetal hemoglobin. This hemoglobin is replaced by the “adult” version of hemoglobin over four to six months after birth.

Thus, signs and symptoms of SCD may not show until all fetal hemoglobin has been replaced, Dr. Lanskron explains.

“Often, the first manifestations of the disease aren’t seen until the babies are six months or older,” Dr. Lanskron says.

These symptoms may include:

Pain
Fever
Enlarged spleen

Why Is Early Detection So Important?

Early detection of sickle cell disease is critical to make sure that babies can live pain-free and receive proper care for their condition.

Treatment for SCD will depend on the type a person has as well as other factors (like their overall health and the severity of the disease). In some cases, babies may need to be started on medication at a very young age.

They may be started on penicillin prophylaxis, Dr. Lanskron explains, which can help protect children from bacterial infections like pneumonia. Children with SCD may be more at risk for severe infections because the disease damages the spleen.

Once a child is diagnosed, “parents are taught how to assess their baby’s spleen and what to do if the baby has an infection … all of these things that are really important that have been demonstrated to improve survival,” Dr. Lanskron says.

“In places like Africa where they don’t have newborn screening, 50,000 children die before their fifth birthday because they don’t have access to newborn screening, penicillin prophylaxis, and educating providers,” she adds. “So, it really makes a big difference.”

Sickle Cell Disease Treatment

Treatment for sickle cell disease may depend on the type you have and the symptoms you’re experiencing and their severity.

According to Stanford Medicine, possible treatment options include:

Pain medication
Blood transfusions, to help with anemia (low red blood count) and other conditions associated with the disease
Vaccines and antibiotics, to protect from infection
Folic acid
Stem cell transplant
Hydroxyurea (sold under brand names Hydrea and Droxia), a medication that can reduce the number of sickle cells in the blood

Other interventions, such as staying well hydrated and avoiding cold weather, can also help with symptoms caused by SCD.

Questions to Ask Your Doctor

If you’ve been diagnosed with sickle cell disease, here are some questions you may consider asking your doctor to help understand your situation:

What type of SCD do I have?
How should I be monitoring my symptoms?
Which treatment option makes most sense for me and my symptoms?
Can I make lifestyle adjustments to help manage my disease?
What activities should I avoid due to SCD?
How will my treatment progress be monitored?

Have a Rare Disease? Here are Some Resources

All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.

Academic Centers and Comprehensive Care Centers

For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.

In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.

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“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”

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Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.

“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”

Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder

Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment )or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.

Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.

Clinical Trials Can be Life-Saving for Some

Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.

By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.

And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.

To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.

“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”

PubMed

Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.

If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.

Newly-Developed Drugs

For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.

The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.

Compassionate Use and Off-Label Use

Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.

Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.