Riley docs write sickle cell book

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Drs. Seethal Jacob and Julia LaMotte live in the sickle cell world every day.

As clinicians in the Sickle Cell Program at Riley Children’s Health, they see children and families who are dealing with the painful blood disorder, which strikes a disproportionate number of people within the Black community.

Now the two have collaborated on a book that seeks to educate others outside their bubble about the disease and the challenges faced by those who suffer from it.

“A Kids Book About Sickle Cell Disease,” written for ages 5 and up, is much more than a children’s book, the authors say.

“This was an opportunity to fill a gap in what children’s books exist already in the sickle cell space,” said Dr. LaMotte, a pediatric psychologist who grew up with a passion for reading and access to knowledge, thanks to her father’s quest to take his children to as many public libraries in their home state of Massachusetts as possible.

While there are many helpful books written from the patient and/or medical perspective, she and Dr. Jacob wanted to highlight the ways in which history has impacted the understanding of the disease and funding for research and treatment.

Their goal was to write a book about a complex topic tailored to kids, but digestible for people of any age. The publishing company they worked with features other titles dealing with cancer, depression, racism, death, trauma, war and other serious issues.

“What I love about these books is that all of them are targeted toward educating others,” Dr. Jacob said. “They can certainly be used by parents to help teach their children, but it’s about raising awareness of these topics broadly. That’s how we wrote the book,” she added.

“It was really to introduce the idea of sickle cell but also hit points that are often stigmatized in sickle cell – like kids being afraid that they’ll catch it, schools not understanding why kids might not have much energy some days or kids might be in pain, or people in the community not knowing anything about it.”

In that sense, the book’s target audience is not the patients and families that the authors see in clinic, but rather classroom teachers, coaches, afterschool programs, etc.

Collaborating on the book with Dr. Jacob was easy, Dr. LaMotte said, because they work so well together.

“I think of us as a balloon and string. She is the string, the one who keeps us grounded, methodical, while I’m more like the balloon, kind of going with the wind,” Dr. LaMotte said. “We are better together, especially when it comes to these endeavors that require a balance between the scientific and the creative.”

What they both appreciate about writing the book is the chance to educate more people about the funding disparities that have led to limited access to treatments or knowledge about the disease.

“We need to elevate the conversation,” Dr. LaMotte said, “so that all voices are heard.”

“There’s a lot that still needs to be done in sickle cell,” Dr. Jacob agreed, while noting that new therapeutic studies and FDA approval for gene therapy are promising.

“Our team is really focused on bringing hope, and there is a lot of innovation right now,” she said. “That’s something to be hopeful for, especially on World Sickle Cell Day (June 19).”

“A Kids Book About Sickle Cell Disease” is available on Amazon and other online retailers.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org