Living with sickle cell disease: Daily care

For individuals living with sickle cell disease (SCD), daily life is often shaped by treatment, preventive care, and emergency planning.

The inherited blood disorder frequently causes episodes of sudden, severe pain called vaso-occlusive crises (VOCs), as well as chronic pain and recurrent infections.

Although multiple available treatments can help manage or even cure SCD, the disease still impacts many aspects of daily life. Learning how SCD works and maintaining open dialogue with care teams can help patients and their families make informed decisions and take steps to prevent future complications.

Challenges of living with sickle cell disease

Living well with SCD will look different for each individual depending on the severity of their symptoms and other factors. Some challenges can include:

• VOCs and chronic pain: Both forms of pain can disrupt daily routines and significantly reduce quality of life.
• infections: Illnesses can make it hard to participate in everyday activities.
• other SCD complications: Conditions such as organ failure and acute chest syndrome can be life-threatening.
• unique psychosocial needs: Individuals may have specific mental health concerns or require extra social support.
• difficulty obtaining education and employment: Symptoms and complications of SCD can make it challenging for people to maintain a regular school or work schedule.

Developing a trusted care team and extended support network can help with facing these challenges. Alongside appropriate medical treatment, this type of network may help improve quality of life.

How routine care helps prevent complications

Depending on the type of SCD and the patient’s age, doctors may recommend check-up appointments every three to 12 months to evaluate and fine-tune the treatment plan.

Routine care is also important for monitoring. During regular check-ups, doctors can run tests to identify early signs of potential complications and intervene quickly. Proactive monitoring ultimately reduces the risk of long-term challenges.

In addition to routine medical care, SCD self-care and lifestyle modifications often help prevent complications. Avoiding common triggers of VOCs and taking steps to prevent infections allows people with SCD to avoid these symptoms and their potential long-term consequences.

Recognizing and avoiding common pain triggers

Pain is one of the most common and debilitating symptoms of SCD, occurring either chronically or as acute flare-ups during VOCs. Medical treatments, therapies, and other interventions can help manage both types of pain.

With VOCs, prevention is key. Although they do not always have a clear cause, certain triggering events can increase the risk of having a VOC. Common sickle cell pain triggers include:

• dehydration
• high altitudes
• infections
• pregnancy
• strenuous exercise
• stress
• extreme temperatures, or sudden changes in temperature

Avoiding these triggers may help prevent VOCs, though this is not always possible in everyday life. Recognizing potentially risky situations and taking extra care to check for early signs of a pain crisis helps when avoidance isn’t an option.

Tracking potential triggers after a VOC may also help people with sickle cell avoid similar situations in the future.

Planning ahead for pain crises

When pain crises do happen, it can be helpful to have a plan of action in place. During planning, people with SCD may want to:

• discuss potential VOC warning signs and when to seek care with doctors
• educate teachers and caregivers on these warning signs and emergency protocols
• assemble a pain-management kit containing over-the-counter medications, heating pads, and other therapies to keep at home, school, or work
• prepare an emergency medical document outlining their SCD history and essential health information

Some VOCs may be manageable at home, while others may require treatment in a hospital setting. Being prepared for either outcome would be helpful.

Protecting against infections and other health risks

Another part of managing SCD daily is avoiding infections. Because SCD can affect the spleen, a key part of the immune system, people with SCD face a higher risk of serious infections. To lower this risk, individuals can:

• stay up-to-date on all recommended vaccines, including annual flu and COVID-19 shots
• take preventive antibiotics exactly as prescribed
• wash hands regularly
• attend routine check-ups
• practice proper food safety by thoroughly washing, storing, and preparing meals while avoiding high-risk items like raw meats or unpasteurized dairy

Another long-term health risk of SCD is acute chest syndrome, a medical emergency that can cause chest pain, fever, coughing, and shortness of breath. Since smoking can increase the risk of this condition, avoiding or quitting smoking is a vital preventive step.

Managing daily activities

Managing daily activities requires balancing factors like chronic pain and fatigue. Chronic pain frequently persists outside of VOCs, disrupting sleep and worsening exhaustion. Anemia — a shortage of oxygen-carrying red blood cells — also causes fatigue.

These symptoms may have a profound influence on daily life with SCD. To support continued participation in everyday activities, people with SCD might:

• collaborate with a care team to develop a personalized treatment plan for chronic pain
• take all prescribed medications consistently
• pace daily activities to conserve energy
• establish healthy sleep habits
• manage stress
• engage in safe, regular physical activities
• eat a nutritious diet

Doctors and other healthcare professionals can help provide personalized recommendations for managing daily activities or addressing specific barriers to participation.

Accessing support

A strong support network can help people with SCD live well and avoid complications.

In addition to specialized medical treatments, comprehensive care for SCD often includes mental healthcare. Medications, therapy, and support groups can help patients maintain psychological well-being, depending on the individual. Local and national organizations often host support groups specifically for people with SCD and their caregivers.

Social workers also serve vital roles on SCD multidisciplinary care teams, providing additional psychological and social support for people with the condition and their families.

However, access to SCD support is uneven, and many people report feeling stigmatized or dismissed when seeking healthcare and other support services. Self-advocacy may help SCD families fight for appropriate care, navigate systemic barriers, and secure accommodations at school or work. Several organizations, including the Sickle Cell Association, offer resources to help patients and caregivers navigate these conversations.

Questions to ask your sickle cell care team

Maintaining open and clear communication with healthcare providers is important to developing a plan for daily living with SCD. Asking about how the disease works helps patients and families make informed decisions and anticipate potential challenges. Healthcare providers can then tailor daily care recommendations to the individual’s unique needs and abilities.

People with SCD who are considering having biological children, especially women considering a pregnancy, should consult their healthcare providers about:

• genetic counseling and the risk of passing the disease to their future children
• how their medication may affect their ability to conceive or their pregnancy
• developing a monitoring plan to help reduce the potential risks associated with an SCD pregnancy

Likewise, doctors may be able to provide risk mitigation guidance for people preparing for surgery with generalized anesthetics. Specific precautions before, during, and after surgery help ensure safety throughout the process.

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Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.