Since 2014, Stepping Stones KE and MDSK has joined hands in raising awareness on rare diseases in Kenya among the general public, policy makers, public authorities, industry representatives, researchers, health professionals and anyone who is willing to listen.
Status of Rare Diseases in Kenya
The actual number of rare diseases and disorders in Kenya is unknown, often times a complete diagnosis takes between 10-15years and would involve numerous hospital visits and countless misdiagnosis instances.
Whenever a family receives the diagnosis of a rare disease/disorder, they are more often than not hearing the name of the condition for the first time and their doctors have to dedicate time to familiarise with the condition. It takes them a long time before they are lucky enough to meet with another family facing the same condition. This is psychologically devastating for the patients and their families.
Thanks to the cultural aspect of our society, rare genetic conditions are explained with superstitious or religious connotations. Most of the conditions have no known cures and require lifelong management.
Because of the life-long impact of rare diseases, most of the rare diseases can be classified as being disabilities. “Persons with disabilities constitute those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and equal participation in society on an equal basis with others.” (UNCRPD 2006)
New-born screening which would help identify most of the genetic conditions right after birth, is unavailable and public funds have not been dedicated to support the care of these rare conditions.
Most health insurance companies in Kenya do not cover expenses arising from genetic conditions which are often time very high and this leaves the burden of medical expenses entirely to the families.
Goal of the Rare Disease Day Campaign in Kenya
2016 Rare Disease Day campaign will seek to explore the gaps, challenges and realities of rare diseases with a focus on to advance rare disease knowledge in Kenya. The campaign aims to;-
• Make rare diseases/conditions disease better known
• Create a space to share the experiences of people with various rare diseases/genetic disorders
• Bring patients and researchers closer together
• Improve access to care and treatment
• Provide hope, information and help to patients, in particular those for whom a support network is not available or known