3 months of intensive work in Uganda (7-9/2021)

We are 3 months into our sickle cell anaemia project in Uganda - what we have achieved.

During July-September 2021 we were able to be intensive at our clinic in Buikwe and further advance our entire project significantly.

What we were able to do:

- Our work has been much talked about in the community, and within 3 months the number of patients in our program increased by almost 50. This means we now have over 140 patients in the project. All of them receive regular and comprehensive care according to international recommendations.

- Clinical, laboratory and imaging investigations have identified additional patients in our project who had to be put on hydroxyurea therapy - the number of patients on hydroxyurea therapy increased by 12 during our stay and we now have 29 patients on this therapy. Each of these new patients will need a sponsor to enable the treatment to take place.

- We imported 200 units of the so-called point-of-care tests - Haemotype SCs - which replace a very complicated method for accurately confirming a diagnosis of sickle cell anaemia, called electrophoresis, which is not available for routine use in Uganda. We were thus able to confirm the diagnosis quite accurately for all patients in our program.

- We have started screening the younger siblings of our patients. We organized a "Sickle Cell Anemia Screening Day" and of the nearly 70 children screened, we not only caught a number of carriers (as expected), but also 3 previously undetected cases of sickle cell anemia thanks to our new test. These children were immediately enrolled in our programme (laboratory monitoring, prophylactic antibiotics, antimalarials and folic acid). In the coming weeks, our Sophie (an adult sickle cell anemia patient we have employed as a patient worker for sickle cell anemia patients) will gradually invite siblings of families who have not yet been screened to be screened. We are very hopeful that we will capture other previously unrecognized patients.

- Probably the most important point was the importation of a new ultrasound machine and the start of regular blood flow investigations through the cerebral arteries. All patients aged 2-16 years were examined during our stay. If abnormal or critical values were found, this examination was then repeated. Thus, we performed almost 150 cerebral artery blood flow examinations. Most importantly, we identified 15 patients with risky values who would need to be monitored approximately every 3-6 months but most importantly we captured 3 patients with critical values where they were at risk of developing a stroke within weeks/months. We then initiated hydroxyurea treatment in these patients. This should lead to an improvement in the findings within a few weeks, thus reducing the risk of stroke.

- However, the ultrasound machine was not only used to perform examinations of the cerebral arteries, but was used almost daily for a variety of acute conditions. Indeed, the ability to have a quality ultrasound machine has dramatically advanced our daily care.

- We all presented the results of our work at the Czech Hematology Congress together via "online transmission".

And in addition to the above mentioned, we managed to implement together with our colleagues from the clinic a number of "small things" that moved our work and care of our patients forward - the help from our colleagues from morphologists from UHKT allowed us to accurately monitor young red blood cells - reticulocytes; we modified the surgery room; we have started the development of standard procedures for the diagnosis and treatment of the most common diseases we encounter; thanks to the donors of HIA Slovakia, we have acquired and commissioned and trained staff in vital signs monitoring and cardiopulmonary resuscitation, and much, much more

None of this would have been possible without the tremendous dedication and help of everyone working on our project - both those who could not be with us on the project and helped us intensively from the Czech Republic, and all the staff at the John Paul II Clinic in Buikwe.

And we have many plans for the coming weeks and months - we are very much looking forward to.