Raolee on Writing About Sickle Cell

Tanwa is a picture book about a five-year-old girl living with sickle cell. Raolee is uniquely placed to write this book as she is a sickle cell gladiator and an educator – she has a doctorate degree in educational leadership and management as well as 20 years in the classroom. With a passion for helping others affected by this disease, Rao is open about her own struggles with it.

Can you please share the blurb for Tanwa: The story of a five-year-old living with sickle cell?

Tanwa is a five-year-old girl living with an inherited blood disorder called sickle cell disease. Tanwa is fun and intelligent, and she narrates how sickle cell affects her. She is the middle child with four brothers and many cousins. Like every five-year-old, she wants to play and have fun but sometimes she is limited by her condition. Tanwa learns to pray to God for strength and healing, and she understands that she needs to stay hydrated to help her body not go into a sickle cell crisis.

Tanwa’s mother encourages her to have fun and find reasons to laugh because laughter is the best medicine.

What exactly is sickle cell?

It’s an inherited red blood cell disorder. Normal blood cells are round or oval, but sickle cells change to become crescent-shaped. They are sluggish and sticky, so they slow blood flow, and they don’t carry as much oxygen. In a crisis, they get clogged, like a traffic jam, and cause excruciating pain in that location like a hammer pounding over and over and over again. It’s worse than labour pain.

It takes time to get out of a crisis, ranging from a minute to a day, a week, or even a month. There’s no telling. To survive, you need pain medication, oxygen, IV transfusions, and more pain meds. When I am in a crisis, they give me narcotics every two to four hours. Transfusions help to improve more quickly. Of course, people in developing countries don’t have that privilege.

I’m also on preventative medication and chemotherapy types of drugs that help me manage life better. Hydroxyurea helps my body make fetal haemoglobin, which carries more oxygen. Oxbryta prevents the red blood cell from turning sickle, so it helps to reduce the occurrence of crises. With this new medication, I’ve had no transfusion this year. I used to have them every three months.

How has sickle cell impacted your life?

I was diagnosed at two, so I don’t really know any other way. But it has a profound, disruptive impact on my life. I can’t do what pretty much every other person does without thinking the whole process through. How is this going to affect me? Stress, cold, and dehydration can trigger a crisis, so I constantly evaluate things to avoid these situations.

Of the many ways to educate about sickle cell, why did you decide on a picture book?

As an educator, it occurred to me that kids read more than adults. I don’t want to write a book that won’t be read, so I figured it might be better to write a children’s book. It really has no age limit, so it can be enjoyed from three to 100. Pictures tell the story and make the information come alive, so people can understand the condition and empathize.

It’s a story with a message. Yes, sickle cell is a condition but with proper care, you can still live a full life.

Where did the title come from?

Tanwa is one of my names. In my language, it means the person we are looking for. My mom had a son and another son, and I was the first daughter, so when I came along, that was one of my names.

Who did the beautiful illustrations?

Aranahaj Iqbal, a young woman from Pakistan who I met on Facebook. I spoke to other people, but something about her drew me to her.

It was my book, my vision, so we had a lot of back and forth. For example, the mother’s outfit in the first draft was something no respectable Nigerian woman would wear, so I sent Aranahaj a picture of some Ankara fabric, and she used that throughout. And I told her to give the mother some boobs. I wanted the character of the mom to be loving, kind, and always singing like my mom, who always said: “laughter is the best medicine”, but she still wanted me to take my medicine.

Do you have any tips for children’s book authors?

Just write it down, even if you write it badly, then go back and edit. I edited my story so many times. And I asked so many other people to read it: English teachers at school and older aunties. I read it thousands of times myself.

For a picture book, you must be able to break it down for the illustrator. Overall, I wanted it to be really vibrant. Then I knew what I wanted on each page. I checked every detail. There were three pages that showed the same time – it was stuck on 5 pm – so I said, “The time has to move.” Some pages were bare, so I asked for pictures on the wall, and toys on the bed, to flesh it out and make it real.

What next?

I’ve planned five to ten books in this series. I’ve drafted three of them, and I’m going through the illustrations for the second one now. Tanwa Goes to School looks at the challenges at school for children with special needs. It’s hard for parents letting their children go, and teachers need notes on file.

I want these books to get to schools, hospitals, and community centres to help educate people about sickle cell. I’ve asked my friends who have children, but none of them knew anything about this condition. It needs to be talked about because its occurrence should be dwindling but it’s not. It’s increasing. Even if it doesn’t affect your children, if they have the trait and they marry someone with the trait, you could have grandchildren with it. And although sickle cell mainly affects blacks, other ethnic groups get it as well. I believe people should check their blood to see whether they are carriers so there’s less chance of the gene being passed on. I made my husband check before we got serious.

Any last words for sickle cell warriors?

If you keep hydrated, take your medicine, manage stress, and see doctors, you can live a normal productive life. Try to be positive to minimize crises.

For young mothers who find out their children have this condition, reach out to sickle cell communities that can teach them how to cope with the disease.

You can follow Rao on: Dr. Rao Lee
Email: Raolee21@gmail.com
Facebook: Rao Lee
Insta: @DrRaolee or @raolee.writes
Twitter: @raolee1
Book sales link: Amazon

Next time: Patti Miller on True Friends, her latest memoir.