A children’s book raises awareness of hemophilia in Kazakhstan | Takeda Stories
A children’s book raises awareness of hemophilia in Kazakhstan
This article includes real-life patient experiences. Individual experiences may vary. This information is available to the general public for informational purposes only; it should not be used for diagnosing or treating a health condition or disease. It is not intended to substitute for consultation with a health care provider. Please consult your health care provider for further advice.
When Akzhan Yerikkzyzy gave birth to her first child, doctors immediately noticed that the boy’s skin was unusually red. After running tests, they diagnosed the newborn with hemophilia, a rare, inherited bleeding disorder that prevents blood from clotting properly.
Shortly after receiving the diagnosis, Akzhan met Lyudmilla Shagabutdinova. Lyudmilla had also recently given birth to a boy — her third child — and he was also diagnosed with hemophilia shortly after birth.
Lyudmilla Shagabutdinova and her son
“We didn’t have internet at the time,” Lyudmilla says. “The only example I knew of hemophilia was from the early 20th century in Russia, when Alexei, a child in the royal Romanov family, had this disease and he had to stay in bed.”
Hemophilia treatment has advanced since the Romanov days, and Akzhan and Lyudmilla, who both live in Kazakhstan, were able to access treatment for their sons beginning at 8 months of age — the boys are now thriving teenagers.
Takeda’s medical team in Kazakhstan wanted to raise awareness of hemophilia in the country and help make a diagnosis less scary for mothers like Akzhan and Lyudmilla.
So, in partnership with the Kazakhstan Hemophilia Association, Takeda Kazakhstan hired a local agency to write a children’s book about what it’s like to live with hemophilia. The book, titled “Ali and the World Within,” is based on the real-life stories of Akzhan and Lyudmilla and their families.
Neval Apaydin, communications and public affairs lead for Eurasia, the Middle East and Africa at Takeda, says the book aligns with our company’s legacy of finding innovative ways to transform patients’ lives.
“We wanted to create a book that would make hemophilia more normal in the eyes of the children who are suffering from this illness,” she says. “When you read it, you find some fictional stories and some real stories of what it’s like to live with this disease. It gives patients with hemophilia and their families the message that they’re not alone.”
Written as an adventure book, “Ali and the World Within” tells the story of a young boy (hemophilia is more common in males than females[1]) who explores an uncertain country full of mysteries. The Kazakhstan Hemophilia Association has so far published 2,000 books for distribution to patients across the country.
“Ali and the World Within” tells the story of a young boy who explores an uncertain country full of mysteries.
“We wanted to create a book that would make hemophilia more normal in the eyes of the children who are suffering from this illness. When you read it, you find some fictional stories and some real stories of what it’s like to live with this disease. It gives patients with hemophilia and their families the message that they’re not alone.”
-Neval Apaydin, communications and public affairs lead for Eurasia, the Middle East and Africa
Raising awareness of a stigmatized disease
Nikolay Gladkih
There are more than 1,800 hemophilia patients in Kazakhstan. Approximately 500 of them are children and teens. Assem Zhunussova, public affairs and patient advocacy manager for Takeda Kazakhstan, says raising awareness of the disease in Kazakhstan is critically important.
“Many people don’t know about this disease; they think it’s an infection and could be contagious,” she says. “There’s a lot of social stigma.”
That stigma is problematic because it can delay diagnosis, and early diagnosis of hemophilia is essential to properly treating it.
Nikolay Gladkih’s story is a sober reminder of what happens when treatment is delayed.
Born in a small village in eastern Kazakhstan, Nikolay was diagnosed with hemophilia when he was 1 year old, but a lack of treatment options where he lived meant he didn’t receive treatment until he was 18.
“This delay in treatment caused severe joint damage, and I now have two prosthetic knees,” Nikolay says. “This book is a valuable tool for helping society better understand an often-invisible disease.”
‘You’re a superhero’
Akzhan and her family
While every patient and family journey is different, a lot has changed since Nikolay’s childhood. Akzhan’s son is in many ways a typical teenager; he belongs to a drama club and studies marketing. But Akzhan says he still struggles with his diagnosis at times.
“One day he asked me, ‘why am I different, because other kids don’t have this?’” she says. “And I said, ‘you’re a superhero, because what you have been through has given you strength, remember that.’”
Akzhan attributes this new outlook to the powerful message of “Ali and the World Within.” The book has also helped her family process their disease journey. The book includes the true story of when she and her husband sat together in their kitchen after first receiving their son’s diagnosis. Akzhan says that when her husband read that passage, he cried.
As for Lyudmilla, she says she was impressed with how accurately the book depicts her family’s experience with hemophilia. And she’s glad to be able to help other families understand that a hemophilia diagnosis doesn’t have to mean a life spent in bed.
“I recently met a mother who has a teenager with hemophilia, and she shared that after reading this story she believes that everything is possible and that her son can live an active life,” Lyudmilla says. “Her son is now going to study in Italy.”
- National Library of Medicine. Overview: Hemophilia. Last updated March 16, 2023.
