SICKLE CELL DISEASE
AWARENESS PROJECT

THE CHALLENGE

Sickle Cell Disease is an inherited blood disease that can result in multi-organ damage, severe pain, increased risk of infection, and even death if not managed appropriately. 9.3% Tharu people; a marginalized group in Nepali society, have Sickle Cell Disease, higher than the rest of the Nepali population.

A major challenge in treating Sickle Cell Disease (SCD) in rural areas is the lack of access to proper healthcare, as local medical facilities are often under-resourced and ill-equipped to manage complex conditions like SCD. Many rural health posts lack trained staff, diagnostic tools, and laboratory equipment, leading to delayed or incorrect diagnoses. Additionally, there is limited awareness of SCD among both the general population and healthcare providers, which complicates treatment. The Tharu community, being marginalized, also faces social and economic barriers such as lower health literacy, limited education, and cultural mistrust of the healthcare system, further hindering access to care.

OUR RESPONSE

In collaboration with the University of British Columbia (UBC) and Her International, we address the challenges surrounding sickle cell disease in Nepal.

Educate Community Members

UBC Sickle Cell Project has developed culturally sensitive educational materials to explain the cause, symptoms, and inheritance patterns of SCD. This encourages individuals to get screened, diagnosed, and seek treatment.

Support the Establishment of a Laboratory at the Local Health Post
Prior to 2015, the local health posts lacked the necessary laboratory equipment and trained staff to conduct blood tests. In response, our teams provided funding to establish a laboratory at the health post, enabling not only the screening for sickle cell disease but also for other critical blood-borne conditions.

Educate Health Care Professionals

Local female health workers were trained in sickle cell disease (SCD) management and equipped with the skills to operate the laboratory at the local health post. This training is a key component of ensuring sustainable care and ongoing support for the community.

IMPACT