The 10,003 Warrior Project founder Leah Kilenga has urged Nakuru residents to embrace people living with sickle cell disease (SCD).
“There are a lot of misconceptions and poor care given to this vulnerable group, mainly because the ministry of health does not have data on the number of people affected by the sickle-cell disease,”
said the young founder who became an ambassador for sickle cell patients after she lost her cousin to the disease while aged 12.
“Even many insurance companies fail to provide medical cover to such patients.”
The 10,003 warrior project aims at creating awareness about the disease through the use of photography. It is
“set to to capture 10,003 Sickle Cell warrior faces and stories in Kenya,”
reads a statement on the projects website.
Kilenga said through the project they hope to see Ministry of Health taking a wise approach towards the surveillance and monitoring of sickle-cell disease in the country and its risk factors so as to collect data on its effects, prevention, treatment and care that are essential for setting the right agenda about it.
She says part of what the Ministry should change is what she sees as a misconception that children born with the disease cannot live beyond five years.
“This usually inflicts pain and misery in them and their parents,” she says.
‘’We are asking the ministry of health to come up with better policies which can enable the patients to manage the disease because many of us have managed to beat the deadline set by our trusted caregivers.’’
Ruth Wekesa, the 10,003 Warrior Project Communication Officer says they have plans of traveling to all the 47 counties in the country in order to create awareness about the disease and to reduce the mortality deaths it causes.
So far they have only managed to tour four counties that including Mombasa, Kakamega, Busia and Nairobi and lastly Nakuru where they use the photographs of patients to create awareness.
‘‘By using photographs we hope to give a voice to the voiceless who are only heard in closed circles and in hospitals because we discover many people suffer silently and as result we end up losing people who could be of great impact to the society,’’ she said.
Wekesa added that they offer group therapy to the victims of the disease by sharing out their experiences and providing guidance and counseling.
“We realized that communities associate the disease with witchcraft and as a result the victims are segregated and treated with a lot of contempt and this results to stigma. Therefore we thought it necessary to share our stories so as to give hope of rising above challenges,” she said.
She said that there was need for the government to set up dedicated centers in the 47 counties to provide adequate services for prevention and treatment of the disease.
‘‘Such centers will provide services such as counseling patients including offering education about preventive health and nutrition, prompt treatment of illness, free provision of vitamin supplements that can significantly reduce incidences of illness and number of premature deaths from sickle-cell disease,’’ she said.
The two spoke to the Kenya Monitor in Nakuru last week during an event to mark the World Blood Donor Day.
Sickle cell disease or sickle cell anemia is a non contagious condition which is characterized by a poor blood flow of oxygen in the blood. This can happen when one is born with abnormal red blood cells.