By Devon Murray
Artwork by Haitham Abd Al Rahim
While working as an intern at Alexandria University hospital, Sara Nasr, a graduate student at AUC’s Institute of Global Health and Human Ecology (I-GHHE), witnessed constant misfortunes. However, the young physician-in-training found herself particularly touched by the stories of children suffering from hemophilia.
“Not only were they burdened with their sickness, but they also had to deal with
the way the community views them,” Nasr explained.
Hemophilia is a rare bleeding disorder commonly caused by missing or defective factor VIII (8), a clotting protein found in blood. Due to the stigma attached to the disorder, many children suffering from hemophilia are kept under strict surveillance and have their activities limited for fear of injury. Nasr noted that some parents were even afraid to touch their children.
It was upsetting for Nasr to watch these children grow up robbed of simple yet crucial childhood pleasures that are often taken for granted, such as playing with friends or feeling the comforting touch of a parent. “Imagine telling a 5-year-old boy, ‘You cannot kick a ball with your friends. You cannot go running. You cannot play. You just have to sit still because any injury could be fatal and kill you.’”
Luckily, a project assigned to Nasr while pursuing her master’s in public health at I-GHHE empowered her to make a difference. “It all started in one of my favorite courses, Health Communication, taught by Dr. Mohamed Salama,” she recalled. Salama, an associate professor at I-GHHE and Nasr’s academic adviser, directed his students to come up with a creative solution for a public health challenge. Students had the option to develop a website, brochure or another type of creative communication tool to send messages to a targeted audience.
“Public health doesn’t mean mainly providing health care. It also includes other aspects,” Salama said, explaining the assignment. “One of them is communicating health messages to stakeholders, who might include patients, families or even physicians. These messages should be sent in creative ways that can reach the average person.”
After many late nights and iterations, Nasr and her team introduced to the world the fictional comic character, Tamniawy.
Dressed in a football jersey and peering out through locks of messy black hair, Tamniawy is a young boy who has a family, friends and hobbies, like any other child. However, he also has hemophilia. His name is derived from tamania, the Arabic number for eight, which is the factor that people with hemophilia are missing in their blood.
The character came to life in order to connect with children across the region, bring them comfort and guidance, and let them know that they are not alone. “I wanted to tell children, ‘You can actually be a hemophilia hero. You can still enjoy your life and all of your activities,’” Nasr said.
Tamniawy was not created solely for those with hemophilia. Nasr is also using the character to educate the greater community about the disorder in hopes of tackling the stigma and the discrimination its sufferers face. “If treated properly, people with hemophilia can be very productive and active in their communities,” she asserted.
“I wanted to tell children, ‘You can actually be a hemophilia hero. You can still enjoy your life and all of your activities.’”
After the class ended, Nasr found that she wanted to continue employing the 10-year-old personality to spread awareness of hemophilia, so she continued posting Tamniawy-related material and the page in online support groups for the disorder across Egypt and the MENA region.
One day, a friend of Nasr who works for pharmaceutical giant Roche sent her a text: “The guys in hemophilia are interested in what you’re doing,” it read. “May I send them your number?”
Nasr was floored. “After jumping on my bed for a couple of minutes, I was like, ‘Yes, yes, of course!’ And this is how it started.”
Since that day, Nasr has met with Roche, the Egyptian Hemophilia Society and local hemophilia patients. She will soon enter an agreement with the company, allowing it to adopt Tamniawy as an official mascot. “It’s actually getting much bigger than I expected,” Nasr said. “Tamniawy is no longer just a comic book character. He will now be turned into a small comic series.”
“Tamniawy is no longer just a comic book character. He will now be turned into a small comic series.”
The determined 28-year-old is working with creative agencies to produce short, educational videos featuring the young boy and his adventures and struggles. What drew Roche to Tamniawy is the character’s potential to effectively keep patients informed, a statement from the company said. “In hemophilia, empowerment and education are two of the main unmet needs facing patients,” said Amr ElSaeed, disease area lead of neuroscience and hemophilia at Roche Egypt. “This is a win-win opportunity for collaboration, and we are very excited to see Tamniawy’s impact on patient awareness.”
Nasr’s innovative approach to health outreach has also grabbed the attention of the International Parkinson’s Disease Genomics Consortium’s Africa mission, for which she is planning a universe of characters to educate and connect with people across the continent who have Parkinson’s and other neurodegenerative diseases. Salama, who is a member of the mission’s steering committee, pitched the idea to fellow members after discussing it with Nasr. “This work will hopefully take her creativity to another level — to the international level,” he said.
The creation of Tamniawy also falls in step with I-GHHE’s core pillar of communication. Hassan El-Fawal, the institute’s founder, director and chair, and AUC professor, explained, “Our mission is for AUC students to have a holistic approach that is going to educate, raise awareness and bring about sustainable solutions to many of the challenges within Egypt and the region.”
Aiming to bridge the gap between health institutions and the communities they serve, I-GHHE stresses sustainability and preventive care. It strives to do away with a myopic approach to public health, which includes extensive collaboration with AUC’s other schools and departments, as well as external organizations. “This collaboration is very important because we learn from them and they learn from us,” El-Fawal said. “We have our own cultural, religious and genetic quirks that are unique to our region.”
What makes I-GHHE stand out as an institution is the diversity of its students, El-Fawal added. “We accept people from communication, psychology and the social sciences. We accept artists and poets. We also, of course, accept nurses, veterinarians, pharmacists and physicians,” he said.
Nasr is pleased that the institute is allowing her to continue to push for better health outcomes in the community through novel avenues. “Breaking into public health and health policy opened my eyes to different scopes and horizons,” she said. “I did take off my white coat, but I can still strive to help people feel better. I know I’m on the right track.”
For Salama, Nasr’s achievement emulates his goal to help students release their creativity and vision. “This is exactly what Sara demonstrated with her character,” he said. “I’m very proud of her, and I can see that this is only the beginning.”
“I did take off my white coat, but I can still strive to help people feel better. I know I’m on the right track.”
“Wait for her,” Salama advised. “In five years, you will probably be hearing about her on television and in international news.”