This is our story
Our journey started with the decision of Prof. MUDr. Zdeňek Ráčil, Ph.D. to leave the campus of a prestigious European teaching hospital and to be helpful in developing Uganda. However, Africa and the children captivated him so much that today we are writing a chapter "The best surgery for sickle cell disease in Uganda" and our story is far from over.
Where we work and who we work with
Our patients are cared for at the John Paul II Children's HIV/AIDS Clinic, which is operated through the Health Initiatives Association in rural Uganda, Buikwe District and the town of Buikwe, east of the capital Kampala. The main focus of the clinic is health and social care for rural children with HIV, which is widespread in this area. You can find more about the clinic on their website: www.hiainternationals.com
What we have built
We established a specialized clinic for children with sickle cell disease. Here we offer regular clinical and laboratory checks, timely treatment of all infections, vaccination against pneumococcus as well as treatment of severe pain during so-called "vaso-occlusive crises". But above all, as one of the first in the region, we offer treatment using hydroxyurea, the only medication that can reverse the course of this disease.
We have established a department where we employ Ugandan staff. We introduce our team below.
We provide regular and continous training to our staff and encourage them to work independently. The education is provided to both health professionals as well as laboratory workers, psychologist and other personnel. Throughout the year, we make several trips to Uganda, during which we work intensively together with our Ugandan colleagues. During our absence, they work independently and we are available at any time via video call during which we also discuss individual patients and/or other pressing issues.
Our mission is to introduce systematic and complex health care for
patients suffering from sickle cell disease in rural area of Buikwe, Uganda and enahnce support
system of patients' social background.
What we finance
Our care and treatment, which is in terms of cost well beyond the possibilities of many rural families, is provided free of charge.
That is why we finance medicines for our patients and pay for
their regular laboratory examinations.
We source all required tests.
We invest into laboratory equipment to ensure further expansion of the program. We provide our staff with computers and other IT equipment.
We pay salaries to the Ugandan team.
Every patient, child, is regularly checked, vaccinated and treated in time in case of complications or other diseases, for example malaria, which is very common.
We vaccinate against pneumococcal infection, which is one of the main life-threatening infections to our patients.
We test the siblings of our patients /in cases where both parents are the same/ in order to detect a possible occurrence of the disease and to be able to start treatment in time for children who are already sick but do not yet have symptoms.
We were the first in the region to introduce treatment with hydroxyurea, medication that allows to manage the disease with a minimum of serious episodes, and above all with the perspective of a full-fledged adult life.
We treat complications. Our
children have a large number of sometimes severe complications: painful crisis,
malaria, bacterial infections. They often require treatment in our intensive
We treat chronic wounds. Around the age of 15, some children with sickle cell anemia develop painful skin ulcers on their lower limbs. We are the only ones in the region that use moist wound healing, which significantly increases the likelihood of healing.
We are the only ones who provide, as part of our care, an ultrasound examination of cerebral vessels, which can uncover potential risk of stroke, common in children under ten years of age. This can then be greatly alleviated by administering a blood transfusion along with hydroxyurea. Stroke affects up to 10% of children with sickle cell disease.
We provide psychological support and counseling.
We support psychological health of our patients as well as their families - sickle cell anemia carries a great psychological burden for patients (especially in adolescence) and their families - psychological care is an integral part of our work.
We educate the local community on issues related to the disease.
We introduce the basics of physiotherapy. We educate both, the clinic staff and the families of our patients.
We identify families in difficult social situations and gradually develop programs that will enable them to take care of themselves economically in the future.
The long-term goal of the endowment fund is:
to build a specialist care center for patients with sickle cell anemia in the Buikwe region
put together a stable team of local health professionals and continuously expand their education
to provide psychological support to patients with sickle cell disease as well as to their families
open a rehabilitation surgery for patients who have suffered a stroke and bone necrosis
establish an in-patient department for the treatment of patients suffering the most serious complications
establish a blood bank and a day care center suitable for administration of transfusions
monitor social situation of patients' families and provide support to families in need
support and motivate patients to complete education
support patients in their integration into society, taking into consideration their possibilities
build a sheltered workshop for handicapped patients
founder - Chairman of the Board
Prof. MUDr. Zdeněk Ráčil, Ph.D.
founder - Project Medical Director
+ communication with donors
Mgr. Štěpánka Podrazilová
MUDr. Barbora Šilhárová
Director of the John Paul II. clinic
Samanya Mohamed Ali
Chief Medical Officer of the Sickle Cell Anaemia Programme
Patient consultant / physician's assistant
Patient consultant / physician's assistant
Receptionist / driver
Social worker and coordinator
MUDr. Iva Tomášková
Member of the Management Board