By Svetla Baeva, Communications Lead
Kazakh doctor changes lives of hundreds of children with rare medical condition
We meet Roza Karabekova, a well-known doctor and surgeon from Kazakhstan, to learn more about her cause to help children suffering from hemangioma in her country.
Twenty years ago, Roza’s son Daniyar was diagnosed with hemangioma, common benign tumors in infants that could prove to be harmful.
A young physician and mother at the time, she made the arduous and costly journey to Russia, staying for nearly a year, so that her son could receive emergency treatment.
Most infantile hemangioma will appear at birth or within the first few weeks after birth. While hemangiomas usually go away on their own, in some cases they will continue to grow or cause serious complications that require immediate medical attention.
Examples of hemangioma cases at the clinic
In the beginning of the 2000s, there was little access to adequate cancer or hemangioma treatment in Kazakhstan. Most families, such as Roza’s, if lucky, traveled to nearby countries for modern medical treatment, taking on hefty bank loans to cover all the costs necessary to travel abroad and stay for months at a time – a huge investment and financial burden on a family. But if they lacked financial resources, as most do, they would often have to live with the condition.
Change is possible
With cases on the rise, today there are thousands of children with hemangioma in Kazakhstan. Despite a number of ambitious sweeping health care reforms to improve services and infrastructure, and expand access, not much has changed – Kazakhstan continues to lack standardized treatment methods, medical specialists capable of diagnosing and administering hemangioma treatment, and adequate modern equipment.
Throughout the last decade, Roza, raised by a family of doctors, has worked tirelessly on each of these fronts. Hemangioma is usually treated in three ways, with laser treatment being the preferred method. But outdated practices in Kazakhstan often favor the surgical method, which leaves behind scars, frequently leading to relapses.
As a practicing physician and an accomplished Associate Professor in the Department of Paediatric Surgery at Astana Medical University, Roza pioneered a treatment, recently receiving a patent, that has led to spectacular medical outcomes.
The team at Roza’s Social Medical Center
Secondly, to increase the number of specialists in the country, Roza teaches young medical students advanced treatment methods and mentors a number of doctors, supervising their research and dissertations on the problem. She also organizes lectures and events, inviting prominent doctors and experts from abroad who are spearheading medical developments in the field of hemangioma and other studies.
Finally, to administer modern treatment, Roza also needed proper equipment. Fueled by her thirst for learning and her passion for healing, she joined Tadamon’s Crowdfunding Academy in 2021 – our interactive training program that empowers nonprofits with the knowledge and skills to prepare and run a successful crowdfunding campaign.
The academy unlocked a range of opportunities for Roza and her team to fulfill their mission.
The force of the community
In 2021, she immediately launched her first crowdfunding campaign to #StopHemangioma by raising funds for the equipment she needed for her clinic. Set up in 2018, the Social Medical Center is a licensed clinic for the treatment of children with a wide range of health conditions – from skin cancers and hemangioma to skin irregularities, growths or malformations. 90% of their patients visit from outside of Astana, Kazakhstan’s capital, to get access to modern treatment.
Roza’s dream has always been to become a doctor to help children. When asked what she loves most about her work, she answers without hesitation: helping. “Right now, I have a chance to help our people who have problems with diseases. This is me,” she says.
The first crowdfunding academy in Kazakhstan, that gathered nearly 30 nonprofits, equipped her to communicate more effectively – helping her to blast her cause across social media and create engaging videos to tell the story of the children waiting for treatment. Roza mobilized her entire network, doctors and patients alike – from promoting the campaign at scientific conferences to using parent’s chat groups to involve them in the campaign.
When people caught wind that change was possible – that they could get access to treatment without taking out crushing loans – many of her patients joined her, becoming spokespeople and supporters of the #StopHemangioma campaign. The game changing moment was when Roza began pre-selling treatment services as perks. The word quickly spread that families could downpay for treatment in the form of a small and affordable donation.
This was the case with three-year-old Sultan, who was suffering from a persistent hemangioma, with a series of complications dangerous to his health. Sultan’s family is from the city of Semey, a region with not many job opportunities To raise funds for his costly treatment abroad, Sultan’s mother launched her own campaign – organizing multiple fundraising concerts, inviting various artists and singers, and even asking for funding from the ruling party. In 2021, they visited the clinic for consultation, and upon hearing about the campaign, Sultan’s mother quickly donated funds and became an instrumental part in mobilizing the community.
Other families could only provide in-kind support to the clinic – from helping with renovations and painting to doing odd jobs such as creating a hanging business sign.
With the collective support of the community, particularly the families most affected by the problem, the campaign raised nearly $12,000 to purchase a portable laser and help children receive modern treatment. The funds amounted to 30% of the total cost of the laser, but it was enough.
A laser of light
Within two months of the end of the campaign, Roza’s team secured a favorable deal on a loan to purchase the laser in July 2021. In this way, they could begin to use it immediately, helping all the families in line for treatment.
In a little over a year, the clinic has treated over 1700 children with the laser – from every region in Kazakhstan – and has also seen an increase in patients coming from nearby countries such as Kyrgyzstan, Uzbekistan and even Russia.
Roza with the newly bought laser (left) and the team in action with the equipment (right)
The clinic has won a name for itself; indeed, many doctors across the country have referred patients with conditions resembling hemangioma to the clinic. It has also become the only place in Kazakhstan that specializes in treating children (even those younger than 1 years old) with hemangioma and other skin diseases using top notch laser equipment.
Before and after treatment pictures of children with hemangioma
One of the first children to receive treatment is Marat, a 12-year-old girl from Almaty who has hemangioma on her stomach, causing her excruciating itchiness. As of now, she has already received several treatment sessions and is on course to recovery. Roza loves it when she visits the clinic, because she always brings traditional food from her village – namely a fermented solid cheese called qurt, which fittingly is a symbol of strength and resilience to Kazakhs.
Marat, a 12-year-old girl from Almaty with hemangioma
Following the end of the campaign, Roza and her team are bent on supporting vulnerable groups with access to treatment. By organizing a mobile clinic to travel around the country to reach those unable to travel or offering monthly free consultations and treatment – the team helps those most in need, including people with disabilities or single mothers with many children.
“Crowdfunding was like a rocket”
The crowdfunding campaign boosted the clinic’s visibility, putting it on the map not only among people suffering from various types of skin diseases, but also positioning them within the medical community as a place specializing in treating hemangioma, with modern equipment. It also opened up opportunities to receive further sponsorships, in-kind support and other grants after the campaign was over. “Crowdfunding was like a rocket – we did it and things went upwards,” says Roza.
First came an in-kind donation from Viva Pharm, a pharmaceutical company, which reached out to them to provide them with 130 ampules of medicine overall, worth over $25,000, which were administered to those in need free of charge.
In the spring of 2022, they also secured a major sponsorship, amounting to over $43,850 to treat more than 120 people with hemangioma. The funding allows them to work 6-8 months on each case, providing multiple treatment sessions.
And finally, after taking part in a government-organized competition called Roadmap for Businesses, they won a $10,000 grant to further develop their clinic by providing a wider spectrum of services. Additionally, they received $18,640 from the Center for Employment and $15,000 via online and offline donations. With the funds, Roza plans to purchase additional equipment for surgeries that are more complicated.
Through the power of crowdfunding and harnessing the community’s energy, the clinic is flourishing – as are the children now free of hemangioma.
Now, Roza can do what she does best – help those most in need.
Learn more about Roza's organization Agabek Karabekov's work and support them.