The Build Your Own SCD School Binder offers school personnel, students, caregivers, and other stakeholders a repository of evidence-based resources and recommended interventions to support the academic and biopsychosocial wellness of students living with SCD. Resources included reflect a diversity of topics, perspectives, and needs. This toolkit is designed to provide a wealth information that may become relevant at different points of a student’s educational journey – from daycare to higher education and employment. For ease of access, resources are organized by relevancy to different stakeholders, including:

• Teachers
• School Nurses
• School Administrators
• Coaches
• Caregivers
• Students

Use this repository to build your own personalized “SCD School Binder” by:

1. Reviewing the resources listed in each section (see Table of Contents, pg.3)
2. Downloading and/or printing relevant items
3. Compiling these materials into a binder for reference throughout the school year

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Chandra Wallace does not remember a time when she was not “sick.” Her childhood was burdened with repeated hospital visits while cold, tired and in pain. At age 10, she had her gallbladder removed because of gallstones. When Wallace was 16, she developed painful ulcers on her leg. She got COVID twice in 2021 and was hospitalized for weeks. Wallace, now 33, has sickle cell disease, which is the most common genetic disorder in the United States, and is widely prevalent in the African American community. It remains incurable. “For a sickle cell patient, there is never a state of normalcy,” she said. “You have to learn how to cope with your body. You have to learn your triggers and what you can or cannot do.” This is why finding her care team at UCLA Health’s sickle cell center, which opened last year, has been a blessing. Her painful crisis after the pandemic would have continued had she not found a team that knew exactly how to manage it, Wallace said. The center, which currently has two hematologists, half-a-dozen primary care doctors, one nurse practitioner and a social worker, has been an invaluable resource for patients like Wallace who have otherwise struggled to find comprehensive care for this chronic condition. Related story

When Precious Lee was a year old, she began to experience severe pain in one of her arms. Her mother, Tammy, knew something was wrong—Precious had stopped eating and wasn’t moving her arm at all—but the doctors at their local hospital didn’t share her concern. “My mom brought me to the hospital multiple times, but they kept telling her that I had the cold or the flu,” says Precious, who is now in her thirties. “They didn’t know what was wrong with me, so they just kept sending me home.” Realizing her daughter needed urgent help, Tammy drove from their home in Illinois to a children’s hospital in St. Louis, Missouri. Once there, Precious was diagnosed with sickle cell disease (SCD), an inherited blood cell disorder that inhibits blood flow, which deprives tissues of oxygen and can cause excruciating pain, stroke, and organ damage. Now, over three decades later, Precious has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face. Below, she describes those challenges and elaborates on opportunities for continued improvement. Related story

People with sickle cell disease (SCD) are now living longer than they did in previous decades. Doctors have a better understanding of the disease, are able to diagnose it earlier, and can more readily treat and prevent the infections the disease can cause. And thanks to new ways to treat and manage the condition, patients are now more aware of what they can do to live healthier, for longer. Still, there is currently no widely available or acceptable cure for the inherited blood disorder. Although bone marrow transplant can offer a cure for some patients, the procedure is not without risks. That’s why creating a plan for managing the symptoms of the condition can be the key to how an adult can live better with SCD. Abstract source

In partnership with the American Society of Hematology (ASH), CDC has created health guidance materials for people with sickle cell disease  (SCD) based on the ASH Clinical Practice Guidelines on Sickle Cell Disease. These materials include common complications of SCD and steps to take for better health. Fact Sheets

• Caring for Common Complications of Sickle Cell Disease
• Steps to Better Heart Health
• What to Know About Blood Clots
• Steps to Better Lung Health
• Steps to Better Kidney Health
• 3 Tips for Safe Use of Medicines
• 5 Steps to Safer Blood Transfusions
• Managing Acute Pain if You Have Sickle Cell Disease
• Managing Chronic Pain if You Have Sickle Cell Disease

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To seek clinical care for your sickle cell symptoms, a first step may be seeing your hematologist or primary care provider. In addition to directly treating your symptoms, these doctors may refer you to other resources or health care professionals. These can include:

• Hematologist
• Cardiologist
• Nephrologist
• Ophthalmologist

Supplemental Resources:

• Social Worker
• Patient Advocate
• Case Manager
• At-Home Care

Mental Health Resources:

• Psychiatrist
• Group therapy
• Counselor
• Psychologist

Rehabilitation Resources:

• Occupational Therapist
• Physical Therapist
• Respiratory Therapist
• Speech-Language Pathologist (SLP)
• Chiropractor

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Sickle cell disease (SCD) is an inherited blood disorder in which oxygen transport by the red blood cells (RBCs) is compromised. SCD is characterized by the presence of abnormal, sickle-shaped RBCs.These can interact with and adhere to other cells, forming clots that block normal blood flow within blood vessels.1 Obstruction by the sickle-shaped RBCs increases the risk for infection and stroke; it also causes painful crises that can last for days or weeks, or long term.1,2 The lifespan of sickled RBCs is shorter than that of normal RBCs, so that anemia commonly develops in patients with SCD.2 Symptoms of SCD can begin in children as young as 4 months of age; therefore, newborn screening is important for an early diagnosis.3,4 The disease requires lifelong treatment, and patients benefit from the care of a multidisciplinary team of healthcare professionals. Specialists Involved in the Management of Sickle Cell Disease Regular medical check-ups are important to prevent serious complications of SCD. Babies with SCD should have follow-up visits every 2 to 3 months until they reach 1 year of age. Children between 1 and 2 years old should have medical appointments at least every 3 months. Children older than 2 years and adults should have annual appointments.5 The medical team following a patient with SCD typically includes a diverse group of specialists, including a primary care physician, hematologist, pulmonologist, cardiologist, nephrologist, ophthalmologist, psychologist, and social worker. Abstract source

Sickle cell disease (SCD) is a group of genetic red blood cell disorders. Most of the time, SCD is treated by doctors called hematologists, who are experts in blood conditions. Pain specialists may also treat people with SCD because pain crises are common complications. Genetic counselors may help support parents having a child at risk for SCD. SCD can cause complications in many organs, so other types of doctors often treat people with SCD. Some additional specialists may include pulmonologists, ophthalmologists, and maternal-fetal medicine specialists. Abstract source

Your Sickle Cell Care Team Managing your sickle cell requires support. It’s important to remember you’re not alone—friends, family, and healthcare professionals are available to help. Building a strong relationship with your doctors may help you get the care you need and deserve Care Team Members Not all care teams look the same. Depending on your needs, your care team may include:

• General Practitioner
• Hematologist
• Cardiologist
• Nephrologist
• Ophthalmologist
• Pain Care Team
• Pulmonologist
• Psychiatrist
• Community Health Worker
• Geneticist or Genetic Counselor
• Transplant Specialist
• Nutritionist

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As a person living with or caring for someone with sickle cell, it is important that you get care that works for you and your family. Whether you already have a treatment plan in place or you’re just beginning to put one together, you’ve likely asked the question: how do I get the best care possible for myself or my loved one? This guide aims to help with that and includes resources on the following:

• Building a care team
• Developing a stronger partnership with your doctor and their practice and/or hospital
• Navigating the healthcare system
• Creating a personalized long-term treatment plan with your care team
• Asking your doctor questions about symptoms, complications, and potential treatment options tailored to your individual needs and goals

This guide aims to give you some tools to evaluate and strengthen your care plan in partnership with your care team. If you feel your care plan isn’t working for you, there may be some information here to help you try a new approach. Abstract source