Help 100 Sickle Cell Anaemia Children in Uganda

Dear friends,

In a tragic turn of events, a 9-year-old boy was laid to rest in Amuria last week after succumbing to sickle cell disease complications exacerbated by a shortage of hydroxyurea medication and blood. This devastating loss highlights the dire circumstances faced by families battling this genetic blood disorder in the Teso region of Uganda.

The young boy, a sickle cell patient, urgently sought treatment at the local sickle cell clinic on March 15, 2024, but tragically, the necessary hydroxyurea medication and blood were unavailable due to a two-month-long shortage affecting all seven facilities managing sickle cell patients in Teso. Hydroxyurea is a vital medication that boosts hemoglobin levels, enabling sickle cell patients to lead better lives with fewer complications. Yet, in a tragic twist, Amuria—like six other health facilities across Teso—had been grappling with a debilitating shortage of hydroxyurea for the past two months. This tablet, crucial for boosting hemoglobin and alleviating complications for sickle cell patients, was alarmingly absent when Joseph needed it most.

one sister, a focal point for sickle cell patients in Amuria, spoke poignantly about the community’s ongoing struggle with stigma and misinformation surrounding the disease.

“We have a lot of problems here. Some parents have lost hope; they watch their children deteriorate at home, and in tragic cases, resort to desperate measures,” Sister lamented, recounting a heartbreaking incident where a parent resorted to fatal measures due to despair.

Sister's call for urgent intervention echoed through the grief-stricken community. “We need drug stocking for our clinic and a functional blood bank nearby,” she implored. “These children deserve a chance to thrive, to learn, to contribute.”

As the region grapples with this health crisis, Sister urges urgent intervention, calling for sustained drug supply to sickle cell clinics and the establishment of fully functional blood banks to support patients in need. She underscores the urgent need for community support and education to combat stigma and ensure timely access to life-saving treatments.

Sickle Cell Disease Burden in Teso

Teso Sub Region, comprising 10 districts and 1 city, is witnessing a concerning increase in sickle cell disease cases, contributing 21% to the national sickle cell burden, which is currently at 13.3%. This substantial figure highlights the significant impact of sickle cell disease within Teso, with data from five sites revealing 2,445 affected individuals, primarily teenagers. Notably, access to statistics from Katakwi and Kumi remains limited.

The prevalence of sickle cell disease is accentuated in areas with high malaria rates, driven by genetic mutations developed as an adaptation to malaria exposure.

Healthcare professionals assert that the disease’s prevalence in the region results from high sickle cell trait frequencies due to intermarriages without prior screening, culminating in sickle cell disease in offspring.

This scenario underlines the importance of premarital testing for sickle cell trait to prevent the birth of children with sickle cell disease.

Data from Soroti Regional Referral Hospital indicates that 826 patients, primarily children under 10 years old, seek weekly treatment at a makeshift clinic near the hospital.

SCOEN is grateful for your genorosity, without your support we wound't have reached communities we ara working with. The previous quarter we have not done much work because of finances, we still appeal for you support. However we have trained the caregivers of this on hygine and sanitation to help the sickle sick children.

Networked with the office of the DCDO, Bukedea. The Senior DCO Bukedea was also invited to train the caregivers on positive parenting and hygiene and sanitation issues and a total of females and males benefitted from GBV training while 125 females and 17 males also participated in child protection training.

We deeply appreciate your commitment to nurturing these young souls. Your kindness and generosity are not only shaping their educational journey but also laying the foundation for a well-rounded and empowered future generation.

Thank you once again for your unwavering support and belief in our mission.

Warm regards,

SCOEN Team

Links:

• Parents in Teso Watch Children Die from Sickle Cell Disease Due
• Soroti hospital registers 3,500 sickle cell cases in two years