How My Parents Set Me Up for Success in Sickle Cell Management

My parents knew they were carriers of the sickle cell trait before I was born, so they made an effort to find out if I had the disease during the prenatal stages of my mother’s pregnancy. Once they found out I had it, plans and preparations were made to ensure they knew how to be effective caregivers from the moment I was born.

My parents certainly tried their best to make sure they kept me as healthy as possible. There are quite a few things that I remember them encouraging me to do from a very young age.

Drink water

The anthem of my childhood: “Tito, drink water!” Even though I didn’t fully understand what the importance of drinking water was, I just knew I had to do it and I never really questioned it. Drinking enough water is important for all people with sickle cell because it promotes healthy blood circulation and reduces the chance of a sickle cell crisis.

Regulate your temperature

Ensuring I’m always kept warm is another habit instilled in me by my parents. Drastic weather changes — especially cold weather — easily trigger my symptoms, so they made sure that during the colder seasons I stayed wrapped up in multiple layers, wore the thickest jackets, and consumed warm drinks frequently. During the warmer seasons, they made sure I didn’t overheat and stayed hydrated.

No swimming

As a child, I took swimming lessons at a leisure center, plus had a few lessons in primary school as part of my physical education. I thoroughly enjoyed these lessons but I quickly noticed a link between the lessons and the number of times I fell ill. It was decided that the lessons needed to stop because they were not worth the constant crises. I was greatly upset me at the time, but it was a necessary decision. I have recently started adult swimming lessons with a cautious approach to make sure I am as healthy as possible.

Sleep

My parents were extremely strict about my bedtime routine. I was sent to bed really early and ordered to take naps on days without school. Fast-forward a couple of decades later, and that sleep schedule sounds like dreamy. Yet, at the time all I wanted to do was play and watch TV — being sent to bed felt like torture!

It is so important for those of us with sickle cell to get enough sleep. Sleep helps with many facets of sickle cell management: it combats fatigue and reduces stress levels that drive crises.

Research

My parents kept hope alive by researching medical advances, often following me to pediatric hematologist appointments with a list of treatment suggestions. Seeing them invest time into conducting research reassured me that I don’t deal with sickle cell alone.

My parents did, and still do, so many things to help me manage my condition, ranging from diet control to emotional support. I am so grateful for their involvement in my care throughout the years.

Sickle cell warriors: What did your parents or guardians do to help you manage your health?

Caregivers: What have you been doing to help your loved one with sickle cell?

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Note: Sickle Cell Anemia 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. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.