Understanding the different ways SCD can impact your body can help you do more to take it on.

When you live with SCD, you quickly learn to expect the unexpected. Finding the balance between taking care of yourself and day-to-day responsibilities can be challenging.

While everyone's experience living with SCD looks different, pain crises and other complications of SCD can lead to serious organ damage that you and your healthcare provider may not see right away, which can make a lasting impact on your life. The options for treating SCD as well as our understanding of the long-term impacts have improved over the years. There is potential to take steps now to help reduce long-term damage.

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Home Care for Children with Sickle Cell Disease

Sickle cell disease (SCD) is an inherited disorder in which red blood cells become C-shaped. This causes impaired blood flow, pain, and other health problems. Symptoms may show up by about 5 months of age.

A child who has sickle cell disease should be under a health care provider's care. But parents can do many things at home to reduce symptoms and maintain the child's health.

Take steps to prevent infections

Infections like the flu can be dangerous for children with sickle cell disease. Children and their caregivers and family members should wash their hands several times a day with soap and clean, running water. This is to reduce the spread of the flu virus and other germs.

Children with SCD are at more risk of illness from salmonella. Salmonella is a type of bacterium. To prevent salmonella infection, your child shouldn't…

Abstract

Introduction: Sickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision-making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD-related decisions remain unknown. The current paper examined caregivers' decision-making processes and priorities when managing their child's SCD.

Methods: Parents and primary caregivers (N = 27) of children with SCA (ages 0-12) completed individual semi-structured qualitative interviews exploring links between caregivers' decision-making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis.

Results: Participating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers…

Chronic pain is the most common complication affecting adults with sickle cell disease (SCD).1 Pain profoundly affects people’s quality of life, functional ability, and health care utilization. Clinicians are often unsuccessful at addressing chronic pain in SCD, especially among the large number of patients for whom nonopioid analgesics aren’t sufficient and those who have developed opioid tolerance. Why aren’t we doing better?

We believe the medical community is looking at sickle cell pain through the wrong lens — treating it as a hematologic problem, while overlooking the neurologic, psychological, and social aspects of chronic pain. Given the current understanding of the neuropsychology of pain, the health care system has the ability to manage sickle cell pain more effectively. Doing so will require accepting a broader understanding of the experience of pain and devoting adequate resources to addressing its multiple dimensions.

The biopsychosocial model helps capture people’s experience of chronic pain…