Kenya Grant

Enhancing Healthcare Capacity and Community Awareness for CAH in Kenya

Pediatric Endocrine Society of Kenya (PESK) & Kajiado County Referral Hospital

The Pediatric Endocrine Society of Kenya (PESK), in collaboration with Kajiado County Referral Hospital, is spearheading a project aimed at improving the diagnosis, management, and awareness of Congenital Adrenal Hyperplasia (CAH) in Kenya. Led by Dr. Phoebe Wamalwa, a pediatric endocrinologist and the President of PESK, this initiative seeks to address the gaps in early diagnosis, medical management, and social integration for individuals affected by CAH.

CAH is a rare yet significant endocrine disorder that often leads to life-threatening salt-wasting crises, ambiguous genitalia in females, and delayed or missed diagnosis in males due to the absence of visible symptoms at birth. The lack of awareness among healthcare professionals and the general population, coupled with social stigma, often results in delayed medical intervention, misinformation, and poor health outcomes.

The primary objectives of this project include:

Educating Healthcare Workers – Training programs will be developed to enhance healthcare workers’ understanding of CAH, equipping them with knowledge on early signs, diagnosis, and management protocols to ensure timely referrals and treatment. Reference guidelines will also be distributed to facilitate standardized care.
Raising Public Awareness – Targeted social media campaigns will be launched to educate the general public about CAH, its symptoms, and the importance of early diagnosis. Community leaders and influencers will also be engaged to reduce stigma and promote acceptance.
Conducting Baseline Research – A comprehensive nationwide survey will be conducted to establish the prevalence of CAH in Kenya. This will provide critical data to inform healthcare policies, resource allocation, and future research.
Establishing Support Groups – Community support groups will be formed for individuals with CAH and their caregivers, providing a safe space for sharing experiences, accessing resources, and receiving emotional support. Focus group discussions will be held to understand their challenges better.

@MATES4Kids is an international movement committed to reducing the preventable mortality associated with Congenital Adrenal Hyperplasia (CAH). CLAN (Caring & Living As Neighbours) is the founding Secretariat of @MATES4Kids and this Activity Report captures key initiatives and achievements of the movement from January 2022 to June 2023.

Acknowledgement of Country. In the spirit of reconciliation, @MATES4Kids acknowledges the Traditional Custodians of Country throughout Australia and the connections of Aboriginal and Torres Strait Islander peoples to land, sea and community. In particular, we acknowledge the Wallumedegal Peoples of the Eora Nation, on whose land CLAN (Caring & Living As Neighbours) is headquartered. We pay our respect to Elders past and present and extend that respect to all First Nations leaders around the world.