How I’m Preparing My Child with Sickle Cell to Take Charge as an Adult

As a parent with a child who has sickle cell disease, you are always on high alert. The “what if” stays with me, as it pertains to my daughter’s condition. My daughter is nine years old, and I still feel the need to always be ready for an emergency.

Sickle cell disease is an inherited blood disorder that affects hemoglobin, the protein in red blood cells that carries oxygen throughout the body. Red blood cells become C-shaped instead of round, making them stiff and sticky. These abnormal cells can block blood flow in small vessels, leading to pain.

Quick backstory, my daughter, who has sickle cell disease, recently had an incident in school (elementary) where her teacher didn’t go into immediate action when my daughter voiced she was having pain in her arm, which is an early sign/symptom of an oncoming sickle cell crisis. Keep in mind that the school (nurse, teachers, staff) were made aware of my daughter’s condition on multiple occasions. So, under no circumstance should my daughter’s pain have been dismissed. The teacher didn’t send my daughter to the nurse’s office or notify me. When I picked my daughter up from school that afternoon, she immediately said her arm was hurting, and I then questioned why she didn’t go to the nurse’s office. Long story short, my daughter ended up having a sickle cell crisis later that same day, lasting for three days. My daughter knew her body and knew something was wrong.

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Symptoms of an oncoming sickle cell crisis:

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• Arm pain
• Leg pain
• Back pain
• Fever
• Shortness of breath
• Dizziness
• Fatigue
• Swelling in the hands and feet
• Jaundice (a yellowish tint to the skin or eyes)
• Abdominal pain

My daughter does a great job at noticing the early signs/symptoms of an oncoming sickle cell crisis, but after this incident at school, I knew it was time to reiterate how important it is for her to take charge as it pertains to her health. It could literally be life or death.

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If a sickle cell crisis is left untreated, there’s a chance of:

• Stroke- a medical emergency where blood flow to the brain is interrupted, causing brain cells to die from lack of oxygen.
• Acute chest syndrome- a potentially life-threatening complication of sickle cell disease characterized by chest pain, fever, and difficulty breathing, caused by a blockage of blood vessels in the lungs by sickled red blood cells. 
• Severe infections- serious, potentially life-threatening infections that a person with SCD is at a higher risk of developing due to a compromised spleen. These infections include conditions like pneumonia, meningitis, sepsis, and acute chest syndrome, which can lead to complications such as organ damage, stroke, and death.
• Leg ulcers- an open sore on the skin of the lower leg that has difficulty healing.
• Chronic pain- pain that is present on most days for six months or longer and can result from nerve damage, inflammation, and central nervous system changes.
• Increased blockage in the blood vessels, leading to a lack of oxygen to vital organs.
• Severe organ damage to the liver, kidneys and spleen (this can lead to premature death).

My daughter is quiet by nature. She is a bit of an introvert and doesn’t like confrontation. She prefers calm environments and won’t go back and forth with a teacher, or any other adult, for that matter. So it made sense as to why she didn’t make a scene in the classroom or press the teacher after her pain was dismissed. 

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This is how I’m preparing my daughter with sickle cell disease to take charge now and as an adult – a method that worked for my family and I was to practice simple, but direct phrases and conversations that my daughter might have with a teacher or any other adult in a school setting. You simply role-play what your child can say when he/she is feeling pain, needs a break, or needs to explain his/her symptoms to an adult. Here are some examples:

• “I have sickle cell disease, and I am in pain.”
• “I’m in pain, I need to go to the nurse immediately.”
• “My body feels weak.”
• “I feel dehydrated, I need a water and rest break.”
• “I don’t feel well, my chest hurts.”
• “I need to rest because I feel faint/dizzy.”
• “I’d like to see the nurse to be sure I’m ok.”
• “I am in extreme pain and my parents should be made aware. Can I please go to the nurse?”
• “My legs are hurting. May I go to the nurse?”
• “I’m having extreme back pain and this feeling isn’t normal. Please send me to the nurse.”

Using straightforward phrases and describing specific symptoms are more likely to grab a teacher’s attention quickly. I’m also teaching my daughter these actionable advocacy tips to speak up for herself while in school:

• Communicate clearly and assertively. My daughter knows she can be respectful, but also make others hear her. She can be honest, specific and direct about her needs and feelings. Say what you mean and mean what you say.
• Ask for help. I’ve stressed to my daughter how teachers and other school staff are there to support her through any and everything during school hours. 
• Have boundaries. This is a super important one for my daughter because she must know her limits (emotionally, physically, mentally). Sickle cell disease is a condition where stress, physical activity, and environments can all trigger a sickle cell crisis. 

As I’m preparing my daughter with sickle cell disease to take charge currently and as an adult, I’m learning that confidence is key. Making sure that my daughter stands firm in her independence and feels empowered to advocate for herself in a school setting.

Before you go, I wanted to share some affirmations that my daughter says every morning before school. They are bold, assertive, and will give your little one all the feels to be empowered throughout the school day. 

• “I am brave.”
• “My voice matters.”
• “I can ask for help when I need it.”
• “I am cared for.”
• “I am strong.”
• “I can do hard things.”
• “I am proud of who I am.”