The conversation we avoid: Telling children they have sickle cell disease

“When can I tell my child that they have sickle cell diseaseexternal link, opens in a new tab?”

As a physician living with the condition, this remains one of the most frequent questions I receive from parents and caregivers. Many parents delay that conversation until their children reach their teenage years or older. Some only reveal the diagnosisexternal link, opens in a new tab after a severe complicationexternal link, opens in a new tab forces the conversation.

I was one of those children. I remained unaware of my status until a serious health crisis at age 11 delivered a double shock that changed my life forever.

Throughout my childhood, I sensed that something about my health was different, even though I couldn’t name it. My curiosity grew as I got older. I often asked my parents questions about my health, but I never received clear answers. They would offer brief explanations or change the subject just enough to make me stop asking.

As a child, I noticed several differences between myself and my siblings. The first was that I couldn’t play as freely as they did. Whenever I exerted myself too much, I fell ill. I also became sick more frequently than they did. Another thing that stood out was the daily medicationsexternal link, opens in a new tab. I took drugs every day, while my siblings did not. My parents also paid unusually close attention to my health. They rarely allowed me to sleep alone, so I slept in their room. They protected me from stress and physical strain, and they handled me with extreme care. In fact, my nickname at home was “Egg.”