Sickle cell disease is more than a diagnosis; it’s a way of life that challenges doctors, patients and their families everyday. It’s also an opportunity. Embracing the presence of sickle cell, gaining knowledge about how this blood disease operates, and taking part in recurrent conversation are the steps we can all take to empower people who are affected by this disease.
Tionne Watkins, also known as T-Boz from the R&B/Hip-Hop group TLC, has been open about her sickle cell disease. She was quoted in PEOPLE magazine, “I was told that I wouldn’t live past 30 or have children,” but she’s done both and become an inspiration for others in the process. Her new single “Champion” is an anthem for anyone who has faced a challenge that seemed unconquerable.
The single is currently available on iTunes, Google play, and Amazon, with proceeds from sales benefiting sickle cell and leukemia foundations. To see how Tionne manages her success as a singer, reality star, and mother, readers can follow her on Twitter at @TheRealTBOZ.
The Harlem Times had the opportunity to speak with Ms. Watkins about her new single and the steps she suggests we take to cope with this lifelong condition. “I believe champions aren’t born, they’re made,” Tionne says of the title of the song. “Everyone has some type of obstacle that they’ve overcome or fought hard to do so. You have to believe and see it to achieve it. Whether it’s training for a track meet or being a cancer survivor. If you fought for it you’re a champion.”
Sickle cell disease is a cause that both the Harlem and global communities should be discussing and raising money to aid. It seems, however, that the general public is not aware enough about blood diseases and the funds that are needed to continue life-saving research. It is important to Tionne that the proceeds from the single benefit sickle cell and leukemia foundations. She tells The Harlem Times, “There isn’t enough awareness and especially with sickle cell. When I’ve done charity events, if we raise funds at that very moment while donors can hear or see the pain these children and adults are in, it’s usually more successful. Because most of the time, afterwards, you don’t get any response.” That can be changed, she explains, by all of us. “If you reach at least one person, and we usually do…that’s good enough because word-of-mouth is the best publicity and knowledge is power.”
As someone who has been diligent about personal health, Tionne was willing to share her thoughts on the importance of advocating for oneself. “It’s best to educate yourself on the disease; it will aid in saving someone’s life,” she advises. “We all may have the same disease but genetically we’re all different, so what works for one may not work for another. You also need a great doctor with good bedside manners. If you don’t have one, find one. You need someone who cares about you as a person and is not just practicing medicine.”
For those of us who have been affected by illness, whether living with a condition or supporting a family member or friend, one of the first things we learn is that the caring process is twofold – dependent on the medical and social communities. People with sickle cell disease benefit from the attention given by a capable doctor and medical facility as a pathway to monitored longevity. Patients can receive treatment from infancy, and work with doctors and labs on preventative and urgent care throughout their maturation. To remedy daily needs, a support system outside of the medical arena plays an important role in creating a normal quality of life.
Dr. Kim Smith-Whitley is the Clinical Director for the Division of Hematology at the Children’s Hospital Of Philadelphia (CHOP) where she is also the Medical Director of the Sickle Cell Clinical Program. The Harlem Times spoke with Dr. Smith-Whitley to share her in-depth knowledge about the disease, treatment, patient’s needs, and current work being done to deliver a cure. The most empowering message to surface from that conversation is that we all can act now to help those who are affected.
Dr. Smith-Whitley’s clinical and research focus is on sickle cell survivorship: predicting and preventing long-term, chronic, and life-threatening complications of the disease. She urges doctors and families to get educated about the newest developments in treatment and screening. A dialogue among health practitioners is central to ensuring patients receive the newest, most effective treatment. People who carry the trait need to communicate with their doctors about their family planning options, in order to gauge the risks and likelihood of producing a child with sickle cell disease.
Families need to be proactive about daily treatments, scheduling transfusions for those at high risk, and seeking ways to quell pain. There have been impressive results with the use of FDA-approved hydroxyurea. A 2011 National Institutes of Health-funded study found that the drug, which was a chemotherapy treatment used for many years to treat people with certain malignancies before being used for sickle cell disease, is as safe and effective for children aged 8 to 19 months as it has been in adults who have sickle cell disease. Hydroxyurea reduced pain episodes and improved blood counts in the children studied. Patients of all ages should speak with their doctors about the benefits and risks of using this drug, which reduces the frequency of severe pain, acute chest syndrome, and the need for blood transfusions, but requires very close monitoring.
The drug, widely available, is not widely known. Dr. Smith-Whitley doesn’t know the exact reason why not, but she suggests that the number of people without access to hydroxyurea is astounding, and may be linked to the fact that its use with sickle cell patients is still fairly new to the medical community. Another possible reason is a hesitancy on the part of patients and their families about using a chemo treatment. Also, patients who are on the drug must have access to a medical facility with the capability to run lab work every two to four weeks.
At the Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia (CHOP), a volunteer-driven campaign to raise funds for care and research is providing promise for patients of today and tomorrow. The campaign, Hope on the Horizon, allows researchers to make major breakthroughs that will help children live longer, healthier lives, including a pioneering procedure to prevent all symptoms of the disease. CHOP researchers are on their way to a cure, while also caring for children currently with the disease. Donations to Hope on the Horizon can help transform patients’ lives and ultimately cure sickle cell disease. Donations can be made at http://giving.chop.edu/site/PageNavigator/HopeHorizon/home.html
Sickle cell disease is an inherited blood disorder that affects red blood cells. According to the Sickle Cell Disease Association of America, the sickle cell trait or carrier state for sickle cell anemia appears in greatest numbers among people of African-American and/or Hispanic descent, although it does occur in people of all ethnicities. Sickle cell disease is the most common inherited disorder among African-Americans. Roughly 1 in 12 is a silent carrier, which means they don’t have the disease themselves but could potentially pass it on to their children, and it affects 1 in 375 births.
Those with sickle cell disease have blood cells that transform from a normally round and flexible shape to a crescent shape, slowing the flow of blood to the tissues. Low blood flow leads to fatigue and pain and anemia. Periodic blood transfusions can increase the number of healthy red blood cells, but there is no universal cure for sickle cell disease, though bone marrow transplants have cured some younger patients.
People with sickle cell disease endure bouts of extreme pain, frequent hospitalizations, and live with the knowledge that the disease is often fatal in one’s forties. Records show it is a global disease, and one that America faces in large numbers. Approximately 70,000 – 100,000 individuals in the United States have a form of the disease and 3 million have sickle cell trait. About 1,000 babies are born with the disease each year in America.
If someone and their partner have the sickle cell trait, which is inherited, together they may have a child with the disease. Sickle cell trait, however, does not turn into sickle cell disease. According to the Sickle Cell Center at CHOP, there are about 3 million people in America with the trait. Screening for sickle cell disease and related hemoglobinopathies is a part of state-mandated universal newborn screening programs in the United States.
There are organizations that prioritize educating and assisting those with the disease. Dr. Smith-Whitley suggests donating or volunteering with these establishments to take part in a global effort to find a cure. We can also help by registering as a bone marrow donor, donating blood, and supporting neighbors who are affected by sickle cell with coordination of care: rides to treatment centers and school, assistance with carrying heavy backpacks and other items, and maintaining awareness and dialogue within your community.
If you’re in need of assistance living with sickle cell disease or would like to volunteer or donate, you may reach out to the organizations below and support their efforts.
Associations:
Sickle Cell Disease Association of America (SCDAA)
American Sickle Cell Anemia Association (ASCAA)
NIH National Heart, Lung and Blood Institute
Camps for Children with Sickle Cell Disease:
SeriousFun Children’s Network, founded by Paul Newman