Sickle cell disease (SCD) encompasses a range of inherited red blood cell abnormalities that can cause the cells to become distorted and break under stressful conditions. As a parent of a child, or even a child suffering from any one of these disorders, here are some helpful tips to manage the condition effectively:

Hydration and Avoiding Dehydration:

• Ensure your child drinks plenty of water and juice. Aim for 1 to 2 liters of water daily.
• Prevent dehydration by avoiding overexertion, exposure to hot environments, and excessive salt in the diet. The goal is not only to intake sufficient fluids but also to minimize fluid loss.

Identifying Triggers:

• Learn what triggers pain and crises in your child and help avoid these triggers as much as possible. Common triggers can include extreme temperatures, stress, and overexertion.

Avoid High Altitudes:

• High altitudes can lead to low oxygen levels, which may trigger a crisis. Therefore, it’s advisable to avoid high-altitude activities whenever possible.

Vaccinations and Infection Prevention:

• Keep up with vaccinations to prevent common illnesses that can precipitate a crisis.
• Early treatment of infections and other diseases is crucial in preventing crises.

Regular Medical Check-Ups:

• Schedule regular check-ups at a nearby hematology clinic. Common indices to monitor include packed cell volume, iron studies, and hemoglobin concentration.

Medication Adherence:

• Taking medications daily can be tiresome, but regular use of prescribed medications is essential in reducing the risk of a crisis. Useful drugs include folic acid, hydroxyurea, and prophylactic antimalarials.

Addressing Mild Pain:

• Do not overlook mild pains as they may signal an impending crisis. Be proactive in administering analgesics to manage pain effectively.

Open Communication:

• Ensure that all potential caregivers are informed about the condition. It’s important that everyone, including the child and siblings, understands the dos and don’ts related to SCD.

Understanding Types of Crises:

Be aware of the different types of crises:

• Vaso-occlusive: Severe bone pain, chest pain, shortness of breath.
• Abdominal Sequestration: Abdominal swelling and pain.
• Hemolytic: Severe jaundice.
• Aplastic: Severe anemia with rapid heart rate and weakness.

Balancing Care and Normalcy:

• Don’t be overly restrictive but remain watchful. Allow your child to flourish, grow, explore, and be curious like any other child. Encourage them to live their fullest possible life.

Additional Tips:

• Seek Specialist Help: Always seek specialist medical and psychological help when necessary. Professional guidance is crucial in managing SCD.
• Self-Care: As a caregiver, ensure you take care of yourself too. Join support groups, seek help, and continuously educate yourself about SCD.

Remember, managing SCD requires a comprehensive approach that includes medical, psychological, and emotional support. By following these tips and staying informed, you can help your child lead a healthier and more fulfilling life.

Written by Dr. Oyinloye Gregory
Medical practitioner, SCD patient health practitioner, caregiver, and parent.