Data about Sickle Cell Disease in America
Sickle Cell Disease (SCD) is a severe and life-threatening inherited blood disorder that affects people of African, Middle Eastern, Indian, Latin American, Mediterranean, and West Asian descent in America. The Centers for Disease Control and Prevention (CDC) estimates that 100,000 Americans have Sickle Cell Disease (SCD), and more than 1 in 365 Black or African American babies are born with the disease. According to many researchers, SCD affects people of African, Middle Eastern, Indian, and Latin American descent and those of Mediterranean and West Asian descent. Most researchers estimate that each year, about 1,000 babies in the United States of America are born with SCD. Although sickle cell-related death among Black or African American children younger than four years of age has fallen by 42% from 1999 through 2002, many Americans are still affected by SCD, and access to comprehensive team care is needed. Literature is sparse on the rate of affected individuals by State in the U.S.; more research is needed in this area.
Understanding Sickle Cell Disease
SCD is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People affected by this disorder have atypical hemoglobin molecules called hemoglobin S, which can change the shape of normal red blood cells into a sickle or crescent shape. The signs and symptoms of SCD usually begin in early childhood. Characteristics of this disorder include but are not limited to a low number of red blood cells (anemia), recurring infections, and pain episodes.
Treatment options
Treatment options for Sickle Cell Disease vary depending on the individual but may include medications to manage pain and prevent complications, blood transfusions, and stem cell transplants. In addition, lifestyle changes such as reducing stress, getting adequate rest, eating a balanced diet, and avoiding activities that could lead to tissue damage may help improve symptoms and reduce the risk of complications. Medications for Sickle Cell Disease are used to help manage pain and prevent complications like infection and stroke. These medications include pain relievers, antibiotics, and hydroxyurea, which helps reduce the number of sickle cells in the blood. Blood transfusions are often used to treat people with Sickle Cell Disease. During a transfusion, healthy red blood cells are infused into the patient, which can help replace the sickle-shaped red blood cells characteristic of the disease. This can help relieve symptoms and reduce the risk of complications. Blood transfusions can also help reduce the risk of stroke in those with Sickle Cell Disease. Stem cell transplants treat Sickle Cell Disease by replacing the patient’s unhealthy red blood cells with healthy donor cells. The donated stem cells are given to the patient intravenously and travel to the bone marrow, forming healthy red blood cells. This can help improve the patient’s quality of life and reduce the risk of complications associated with SCD.
Treatment options
- Blood-bone marrow transplant
(BMT) replenishes unhealthy blood-forming cells with healthy ones. Blood-forming cells (blood stem cells) are infantile cells that grow into red blood cells, white blood cells, and platelets. These are found in the soft tissue inside your bones, called bone marrow.
- Medication to prevent the sickling of red blood cells and FDA-approved drugs.
SCD patients can take prescription, over-the-counter medicines, herbal supplements, and vitamins. Each medication for SCD works differently and may affect the result of a particular blood test. Alpha Health Group will say to send a list of all medicines SCD patient is taking and show it to your doctor.
- Reduce vaso-occlusive and pain cries.
When HbS undergoes deoxygenation, it can polymerize and induce distortion, rigidity (causing vaso-occlusion), and structural damage that cause RBCs to be sickle-shaped, which becomes fragile (causing breakdown and shortened lifespan of RBCs). This results in chronic hemolytic anemia and the vaso-occlusive episodes (VOEs) that characterize SCD. Therefore, special care will be essential instead of treating unconcealed complications. Educating families, patients, and providers to monitor and manage chronic, progressive damage by involving SCD patients in long-term care planning.
- To mitigate multiple complications
These are daily activities and behavior SCD patients may consider mitigating complications and taking folic acid supplements daily and eating healthy food. Drink much water, avoid extreme temperature environments, and exercise regularly, but do not overdo the excise. SCD patients must not smoke and be careful when taking nonprescription medications.
- Reduce the risk of infection.
There is data to prove that Zinc supplementation in SCD children has been demonstrated to improve somatic growth (45, 46), and supplementation of vitamins A, B, and magnesium has decreased the frequency of infection, painful crises, and emergency department visits.
- Overdose of iron through blood infusion
Transfusion is one of the treatments used to fight the severe crisis of SCD. Overdose of iron through blood transfusion puts SCD patients in great danger.
Activities to help patients
Alpha Health Group is a nonprofit organization that assists Patients with Sickle Cell Disease and can take specific measures to help manage their symptoms and reduce the risk of complications. These activities may include getting adequate rest, reducing stress, eating a balanced diet, avoiding activities that could lead to tissue damage, and participating in regular physical activity. Regular doctor check-ups can also help monitor the patient’s condition and detect any early signs of complications.
Getting enough rest is essential for managing SCD symptoms as it helps to reduce fatigue and encourage healing. Patients should aim to get at least 7-8 hours of sleep per night and avoid overexerting themselves. It’s also essential to reduce stress levels as this can help to reduce pain, improve sleep quality, and reduce anxiety. Many patients with SCD should eat a balanced diet to maintain health and energy levels and include plenty of fruits, lean proteins, vegetables, and whole grains. Patients must avoid activities that could cause tissue damage, such as contact sports, as this can further aggravate symptoms. Mild to moderate physical activity is recommended for patients to help maintain strength, flexibility, and stamina. Swimming, walking, and yoga are good options as they are low-impact activities. It is also essential for patients to attend regularly.
SCD Surveillance
The Alpha Health Group is dedicated to advocating, using epidemiology methods to collect data to help improve respect and reduce the stigma associated with care provided to SCD patients nationwide. Identify the target population with a high risk of SCD, engage them in activities, and design educational programs and assessments of the clinical effectiveness to expand access to care.
Educational activities and programs available
Alpha Health Group assists with numerous educational activities and programs to help Sickle Cell patients recover and encourage their caregivers. These education programs, such as creating awareness and organizing forums, talks, and presentations about sickle cell, can help patients and their families learn more about the condition, understand their treatment options, and manage their symptoms. Other programs may include classes or workshops on nutrition, stress management, coping skills, and physical activity. The Alpha Health Group provides support groups and counseling services to help patients and their families cope with the diagnosis. Educational activities can also help increase awareness of the condition and provide resources for those living with SCD. In addition, educational activities can help to encourage patients to participate in self-care activities and learn about their disease process. This can help them better understand their condition and make informed decisions about their treatment and lifestyle. Educational activities are essential to Sickle Cell Disease management and can play an important role in helping patients and their families cope with the condition.
Data & Statistics on Sickle Cell Disease
Sources:
Centers for Disease Control and Prevention – https://www.cdc.gov/ncbddd/sicklecell/data.html
United States Food and Drugs Administration- https://www.fda.gov/consumers/minority-health-and-health-equity-resources/sickle-cell-disease