Thalassemia Treatment Fund
Afghanistan has been in the news, even more than usual. With President Biden’s decision to pull U.S. troops out of the country, many are fearful of what will happen next. Between this uncertainty and the impacts of years-long conflict in the region, the economic, living, and educational circumstances of Afghan citizens are in turmoil.
For these reasons supporting the health, well-being, and education of children is particularly important in Afghanistan. One population that suffers immensely as a result of the situation is those who live with thalassemia—a devastating but common blood disorder that can impede (and sometimes cost) the lives of those it afflicts.
Uranas's story: Easing the burdens of families
Uranas is one of 200 Afghan children receiving treatment at the Child Foundation-funded thalassemia clinic in Mazar-e Sharif, Afghanistan. She’s 14 years old, and for many years she couldn’t get good treatment for her disorder. Her father works but cannot provide more than basic daily necessities for his family. Without assistance, Uranas wasn’t going to get what she needed.
Getting regular blood transfusions and other care at the clinic has allowed Uranas and her family to live healthier and happier lives. She needs medical attention every 15 days, as without blood transfusions, Uranas becomes lethargic and anemic, a sallow and exhausted child.
The clinic staff has been helpful, supportive, kind, and present. Uranas herself talks about how grateful she is that the staff are there not just for her but for the other 200 children who need care:
“Since the Child Foundation funded this clinic, the situation has become much easier for us, and we no longer need to buy blood and pay costly fees. Many thanks to the members of the Child Foundation for providing these services, even in these COVID 19 circumstances, to needy families without worrying about their own health.”
Uranas and her parents are constantly worried about her well-being and of course, want her to enjoy life as much as possible as a young woman. Uranas’s mother has devoted her life to caring for and supporting her daughter, and we are thankful that we’ve been able to ease their burdens by funding the tough and important work of the thalassemia clinic.
Why is thalassemia so serious?
Thalassemia is an inherited blood disorder in which the body makes an inadequate amount or abnormal form of hemoglobin. Hemoglobin serves an essential function in the body. It is a protein molecule in red blood cells that carries oxygen from the lungs to the tissues of the body. It also carries carbon dioxide from the tissues back to the lungs. The disorder of thalassemia causes the destruction of red blood cells, which leads to anemia. When this anemia goes untreated, it can lead to organ damage and even death.
Those born with thalassemia typically begin showing signs within the first two years of life. This means that millions of children are suffering from the effects of this disease.
Thalassemia affects children around the world, and it’s undoubtedly challenging no matter the location or situation. But children in developed countries with access to healthcare are able to receive the proper treatment to manage it and live with it with diminished impacts. As reported by the Thalassemia International Federation, “According to estimates, less than 12% of children born with thalassemia worldwide are regularly transfused and only 40% of them receive proper iron chelation.” This offers a sharp contrast to children in developing countries, where it is often incredibly challenging to access or afford proper treatment for the disorder.
What is Child Foundation doing?
Much like in other parts of the Middle East and Central Asia, thalassemia has a high prevalence in Afghanistan. With the challenging logistics of Afghan medical care, we don’t have an exact number of how many children are living with thalassemia in the country. But we do know that far too many of those children are not receiving the care they need.
When thalassemia goes undiagnosed and without treatment, it is often fatal. But even after diagnosis, if sufficient treatment isn’t possible, accessible, or affordable, it is not uncommon for children to lose their life to this disorder.
Child Foundation funds the only free thalassemia pediatric clinic in Afghanistan, founded in 2018, which treats nearly 200 patients who need blood transfusions and treatment three to four times a month. In Afghanistan, this treatment is extremely hard to come by, and without regular medical care children may not live past their fifth birthday.
The thalassemia clinic is part of Mazar-e Sharif Hospital and was the first to import the drug Deferasirox for life-saving treatment. In addition to offering Deferasirox, the clinic administers other medications, holds blood drives, performs regular blood transfusions, provides genetic testing to assess a couple’s likelihood of having a child with thalassemia, facilitates care for those who must travel for thalassemia treatment, conducts medical training for hospital staff, and helps educate and inform families and the community about thalassemia.
At this time, the Mazar-e Sharif medical community does not have the expertise to treat the complications which arise from severe thalassemia cases. Surgery for these severely affected children has usually been outside the country—but COVID-19 made this impossible. Health care workers in Mazar-e Sharif and other parts of Afghanistan have had to rely on expertise in Kabul. Aside from providing funding to make this exchange of knowledge and care, Child Foundation is dedicated to investing in the current medical community in Mazar-e Sharif.
Zoleykha's story: Back from Kabul and feeling great!
Zoleykha is a sweet young girl in Afghanistan who was born with beta-thalassemia, one of two major types of thalassemia, which requires lifelong blood transfusions. Due to her worsening health, Zoleykha’s doctors determined that she was in dire need of surgery. Unfortunately, the city where she lives, Mazar-e Sharif, does not have adequate supplies or expertise to provide this kind of treatment, and she needed to travel to Kabul for surgery in order to have the best shot at survival.
With the help of generous support from donors, Child Foundation funded Zoleykha’s travel to Kabul and her urgent surgery. Thankfully, the surgery went great. She has since recovered and says, with the world’s biggest grin, that she’s “feeling well now!”
Zoleykha’s brother also lives with thalassemia and may require expensive and life-saving surgery in the future. With your help, we can make these kinds of treatments possible.
There are so many more children like Zoleykha and her brother in Afghanistan in dire need of life-saving medical care. Funding their care can mean the difference between succumbing to this debilitating disorder and the opportunity to thrive in the school, their community, and their childhood. Zoleykha: A thalassemia success story