Living with Blood Disorders by Mediaplanet_USA

A Mediaplanet Guide to Improving and Managing Blood Health

Living With Blood Disorders

Tionne Watkins Also known as “T-Boz,” the TLC member shares how she’s managed sickle cell anemia throughout her career An in-depth look at HemaPlex — the supplement that can prevent iron deficiency and improve blood health The case for increasing access and representation in blood cancer research

APRIL 2021 | FUTUREOFPERSONALHEALTH.COM

An Independent Supplement by Mediaplanet to USA Today

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Why the Nation Needs a Diverse Blood Supply

to maintain the nation’s blood supply to meet the needs of the 1 in 7 patients entering a hospital that requires a transfusion.

People living with rare blood disorders like hemophilia, beta-thalassemia, and sickle cell disease require blood continuously from a diverse pool of eligible donors.

lood disorders are not a choice for the millions of patients living with them. For individuals who are fortunate enough to not live with such disorders, there is a choice to ensure a safe and ready blood supply is available for patients in need. The nation’s blood supply depends on altruism in the form of blood donations from a diverse pool of donors. Such treatments can be a necessity for patients suffering from blood disorders. These individuals nationwide rely on community blood centers to collect, test, and provide blood to hospitals, securing its availability whenever and wherever it is needed. Diverse donors of all ages play a vital role in the work of community blood centers and healthcare providers assure

patients that their blood needs will be met. Maintaining the supply To maintain the U.S. blood supply, the importance of all eligible individuals donating blood is paramount, as blood only has a shelf life of 42 days. It takes 24-48 hours to process, test, and prepare a pint of blood for transfusion. With more than 30,000 pints of blood used daily in the United States, someone requires blood every 2 seconds. When receiving treatment for blood disorders like hemophilia, beta-thalassemia, and sickle cell disease, the need for blood is ongoing. America’s Blood Centers and its member blood centers need a diverse pool of donors of all ethnicities, and ages 16 or 17 years old and above depending on the state,

Complex requirements Did you know individuals receiving treatments for sickle cell disease and certain blood disorders may have more complex blood compatibility needs? Due to the frequency in the number of blood transfusions they receive as part of their treatment, such patients can develop antibodies that require a more precise ethnic or medically based match, highlighting the importance of diversity amongst all eligible blood donors. Estimates suggest that more than 60 percent of the U.S. population is eligible to give blood, yet less than 10 percent donate. This must change for the sake of all patients living with blood disorders, in addition to those individuals undergoing surgeries or receiving treatment for cancer. All eligible donors play an integral role. Together, you and your community blood centers are a key part of the nation’s healthcare system, connected by the goal of improving and saving lives. The challenges of the past year have demonstrated the resiliency and reliability of community blood centers and individuals throughout the United States to persevere in spite of unprecedented disruptions to ensure blood is available whenever and wherever needed. Blood donation must become a habit to replenish the nation’s blood supply, thereby preventing shortages that threaten access to lifesaving treatments to fight blood disorders. Help us continue to make a difference in your community by encouraging eligible donors to contact their local blood center to schedule and keep appointments to donate. n Kate Fry, M.B.A., CAE, Chief Executive Officer, America’s Blood Centers

Why Cancer Patients Need More Blood Than Those Fighting Any Other Disease Nearly one-quarter of the nation’s blood supply goes to patients fighting cancer. Blood donors play a vital role in their care. Patients fighting cancer need more blood than those fighting any other disease. This need is part of the reason why the American Red Cross encourages people across the country to give blood regularly, ensuring loved ones have the strength and support to battle cancer. According to the American Cancer Society, 1 in 3 people in the United States will be diagnosed with cancer in their lifetime. In 2020 alone, it was expected that approximately 1.8 million new cancer cases would be diagnosed in the United States. However, delayed routine cancer screenings during the height of the pandemic might have impacted timely cancer diagnosis. Many people undergoing treatment for cancer will likely have a need for blood. An increased need Some types of chemotherapy can damage bone marrow, reducing red blood cell and platelet production. Other times, the cancer itself or surgical procedures cause the problem. Blood products are often needed. In fact, someone undergoing cancer treatment requires five units of blood every minute. In spite of this, only 3 percent of people in the United States give blood. More people are needed to donate regularly to help meet the need. A loved one’s cancer diagnosis often makes families and friends feel helpless. That’s why giving blood and platelets is so important. Giving blood is quick and easy. The whole process takes only about an hour, and only about 10 minutes of that time is spent on the donation bed. With an hour of time, blood donors can help give a lifetime to someone fighting cancer. Dr. Pampee Young, Chief Medical Officer, American Red Cross

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Kimora, 13, and Kylie, 9, are sickle cell warriors. These sisters were diagnosed with sickle cell disease in early 2020. Witnessing the debilitating pain of these girls caused their parents’ heart-wrenching hurt. “As a parent, as a mother, no one should have to see their child suffer,” said their mom, Destiny Van Sciver. Sickle cell disease affects approximately 100,000 people in the United States and 1 in 343 Black American children are born with the disease. The only known cure is a bone marrow transplant. In a truly unique situation, it would only take the power of one donor’s stem cells to be the cure that both Kimora and Kylie need to live happy, healthy, and painfree lives. “I just really want to get this bone marrow transplant so that I can live life to the fullest,” Kimora shared. Kimora was compelled to replace her love for science and shopping with intense physical therapy and learning how to walk again after she had a complete right hip replacement surgery due to the effects of sickle cell disease. “This has been the hardest time in our lives, watching our daughter fight to walk again,” Van Sciver said. “In addition, the doctors informed us that Kylie’s abdominal pain is a result of an enlarged spleen, which is a part of sickle cell organ damage.” A perfect match would give this family hope for a brighter future. Globally, DKMS is working diligently every day to add more potential lifesavers to the donor pool to ensure Kimora, Kylie, and every patient like them can get a second chance at life. Sharon Persaud, Senior Public Relations Manager, DKMS

How TLC’s T-Boz Is Raising Awareness of Sickle Cell Anemia PHOTO CREDIT: DREXINA NELSON

It Only Takes One Person to Save Two Sisters

Tionne Watkins, better known by her stage name T-Boz — the “T” in the ‘90s R&B girl group TLC — is raising awareness of a serious blood disorder that primarily affects people of African descent: sickle cell anemia. ickle cell anemia is a type of sickle cell disease in which red blood cells stick to vessel walls, blocking blood flow and preventing oxygen from reaching the body’s tissues. This can cause fatigue, pain, swelling, and a number of serious injuries and illnesses. Watkins, 50, was first diagnosed with sickle cell anemia when she was a child. She says her mom was a major reason that diagnosis didn’t keep her from following and achieving her dream of becoming a singer, songwriter, and dancer. “She basically was telling me I could do anything that I set my mind to, and she was supporting me as long as I tried to be the best of whatever it was that I chose to be in life,” Watkins said. “And I chose to believe my mom. Some people don’t have a

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strong person like that in their lives to help them. What the doctor said could have ruined my life.” Learning the ropes Even though the four-time Grammy winner knew she had sickle cell anemia, it took Watkins a long time to learn how to effectively manage the condition. “Early on, it wasn’t managed at all,” she said. “That’s why I ruined every tour and got sick every time.” Watkins now works with managers to ensure things go smoothly while on the road. “Everything is strategically planned out, as far as how long travel is, what days I’m off, and what cities we do or don’t go to,” she said. When TLC tours, they’ll avoid stops in high-altitude cities like Denver and Albuquerque, and

they’ll always arrive early enough to give Watkins plenty of time to rest and acclimate. Over the years, Watkins has learned that massage therapy helps reduce her symptoms, so she always travels with a massage therapist. She also takes cannabidiol (CBD) to improve her immune system, and has launched her own line of CBD, called TLCBD. “It’s not a cure,” Watkins said of CBD, “but now when I do get sick, it’s not as often and not as bad.” Since she started taking the proper precautions, Watkins has gone on four consecutive tours with TLC without a major incident. Passing it on Because sickle cell disease is hereditary, it’s important for people of child-bearing age to get tested for it, and all newborns (even healthy looking ones) should be screened as well. Knowing you have sickle cell disease is the first step toward receiving the right care and managing the condition. “You’re the only person who can communicate with your doctor, and you have to be your own advocate,” Watkins said. “You, or your parents, have to be able to communicate with your doctor so they can help you.” While having sickle cell anemia certainly hasn’t made life easy for Watkins, she says everything she’s had to overcome has made her the person — and artist — she is today. She hopes other people with sickle cell disease can look at her story and what she’s accomplished, and be inspired to pursue their dreams as well. “If you want something in life, you have to go after it,” Watkins said. “Sometimes, yeah, I have to work 10 times harder than the average artist to do what I want to do, but that’s what I want. So I’m not gonna sit down and let a disease take over my life.” n Dustin Brennan

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Going Above and Beyond for Sickle Cell Patients in South Carolina The Medical University of South Carolina (MUSC) Children’s Health has been a national leader in sickle cell disease treatment and research. We talked to Drs. Sherron M. Jackson and Shayla Marie Bergmann about how their work benefits the region and the country.

What is the history of sickle cell patient care at MUSC Children’s Health? Sherron Jackson: The sickle cell program began in 1985 as a newborn screening clinic and boasts over 30 years of patient care and clinical research. The first in the state, the MUSC program was the catalyst for the 1987 statewide newborn screening mandate.

How is MUSC improving pediatric sickle cell care in the region?

modify sickle hemoglobin are provided for eligible patients in our clinic.

Shayla Bergmann: MUSC’s understanding of this complex blood disorder supports children and adults up to age 25 throughout South Carolina. Successful treatment of our large population of patients allowed for participation in national clinical trials, leading to the development of national standards of sickle cell care.

What are your particular interests in treating sickle cell?

Tell us about your therapies and pain management programs.

What are your areas of interest in treating sickle cell?

SJ: The major therapy to prevent bone pain episodes is hydroxyurea. Each patient has a written plan for managing pain at home (oral medications) and in the emergency department, clinic, or hospital (intravenous). Recent FDA-approved agents that

SB: I am particularly interested in the access to clinical trials we provide our patients. With 10 ongoing trials and six on deck, I am very excited about our research in the areas of molecular modification, gene therapy, CRISPR, and bone marrow transplant (BMT).

SJ: I meet the babies at birth and work with families to educate them about the disease, and then create the best care plan based on our proven therapies and pain management programs.

What research projects has MUSC participated in? SJ: MUSC was instrumental in the NIH-funded trials in sickle cell children including stroke prevention using transcranial doppler (STOP), hydroxyurea (Baby HUG), and the Bluebird trial using gene therapy to cure the disease. What is the future of sickle cell treatment at MUSC Children’s Health? SB: The future is busy and bright. Aggressive research creates new and improved treatments, providing families with more options. There are more treatment possibilities through CRISPR, new genetic therapies and molecular modification, and improvements in existing therapy and pain management options. Additionally, telehealth improves access to our experts through technology, allowing patients to better maintain care plans and make adjustments in real time. n

The Future of Pediatric and Obstetrical Care is Here The MUSC Shawn Jenkins Children’s Hospital and Pearl Tourville Women’s Pavilion is a state-of-the-art building that will transform how care is delivered to children and women, seamlessly integrating children’s care with obstetrical services. MUSC Children’s Health is South Carolina’s most comprehensive system of preventive and clinical care devoted exclusively to the well-being of children from before birth to 18 years of age. Our integrated health care system consists of a nationally ranked hospital and expertise in the most advanced care possible in more than 27 specialty areas. To learn more, visit musckids.org/about-us/sjch

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How Blood Donations Keep Our Communities United and Strong Giving one’s blood to save a patient’s life is easily recognized as a profound act of generosity. With no substitute for blood, the role of donors in sustaining a huge range of medical care is essential. Each year, millions of people rely on transfusions to survive cancer, trauma, childbirth, surgery, and other conditions. Over decades, donor recruiters have leaned heavily on associated medical narratives and examples, and the public has responded positively. Unfortunately, as the pace of life accelerates, value systems shift, and communication channels fragment, blood banks are more frequently strug-

gling to keep the blood supply up to meet demand. Overall, the pandemic year’s disruptions have worsened this trend. In response, new stories and approaches are needed to inspire donors. Thankfully, many positives can be highlighted: Inclusion. Pints of blood are a universal gift that can help literally anyone, with no regard to age, gender, race, education, income, nationality, or other category. Very few kindnesses have such broad-ranging benefits. Preparedness. Hospital shelves stocked with blood signal readiness to respond to disasters, whether natural, accidental, or manmade. Because

of the time needed for testing and paperwork, only blood given days prior can help when an emergency occurs. Community. Blood drives are gatherings, places of fellowship where charity is served by teamwork. No one can give blood alone, and the sharing must be shared. The cookies only add to the good spirits. Uplift. Donors rightly take joy in sharing part of themselves to help others. Spiritual satisfaction is a natural side effect of celebrating one’s good health in hope that someone else can be so blessed. We deliver good days for donors, as well as patients.

Legacy. Young patients getting blood today are going to live into the 22nd century. Donors are literally becoming physical parts of those lives and their destinies. Think of a good deed with a shelf life of 100 years! If you are a blood donor, thank you for creating everyday miracles. Please know that in unsettled times, your actions are a powerful beacon showing the good we can accomplish for each other. If you want proof, take a moment to consider what it says about our society that our blood supply never failed during the COVID-19 crisis, despite all the upheaval and obstacles we confronted. n Dr. John Armitage, M.D., CEO, Oklahoma Blood Institute

Increasing Access and Representation in Blood Cancer Care and Research Achieving health equity requires removing barriers and creating opportunities so that every person has access to quality healthcare and the opportunity to be as healthy as possible. We have witnessed this firsthand in service to patients with lymphoma, the most common type of blood cancer. Patient-centered education A diagnosis or relapse of lymphoma or chronic lymphocytic leukemia (CLL) often leads patients and their caregivers to sift through a complex network of information. This becomes more challenging when social and systemic barriers prevent a patient from accessing accurate health information.

As a result, more nonprofits and medical institutions have invested significantly in education materials and support services that assist patients as they navigate their diagnosis. Increasingly, this disease-specific education evolved to also address financial toxicity, and the concerns many patients have regarding the affordability of their cancer treatment. Now consider that data from the U.S. Census Bureau’s most recent American Community Survey showed that 21.6 percent of Americans spoke a language other than English at home. Recognizing that patients rely heavily on information available to them to maintain their health and their families’ health, it is