Lea Kilenga Masamo who is one of the beneficiaries of the just concluded crowdfunding initiative by 1% ‘s Cheetah Fund is well on her way to raise awareness for the sickle cell condition through a photo documentary that will be posted on her blog, social media and eventually website.
In an interview with HumanIPO, Masamo said that the condition is a genetic disorder that affects the red blood cells, deforms them and they make sickle cell shapes making the cells rigid, stick together which leads to the blocking supply of blood to small capillaries.
This means that organ function, oxygen supply, and bodily function and every condition related to blood is hampered. With these, people with Sickle cell disease face many challenges.
“Imagine the only thing you know, experience and feel is pain for most of your life and you cannot explain the pain to someone else,” explained Masamo.
Christening her project 10003 warrior project, Masamo will take photos of 10003 patients with sickle cell in Kenya so that they can be empowered to come and speak up about the disease, inform people and promote awareness.
“We are born 4 in my famil, three of us were born with the condition while one was born perfectly healthy. Unfortunately ones of us succumbed to the disease. In the 10003 warrior project, 1 represents the one we lost, 3 represents the three remaining siblings while the zeros represent the number of people all over we have lost to the disease. The project is very personal to me,” Masamo said.
Masamo is now encouraging people affected by the disease either directly or indirectly to come up and speak about it and eliminate the misconception that people living with the condition cannot live normal, productive lives.
The woman who is now in her mid-twenties despite the condition making it difficult for the affected to live beyond their childhood, foresees a situation where awareness will get the right people such as donors and governments to notice and tackle the condition policy wise.
“With the right information about the disease, we will be able to capture the number of people affected , their ethnicity , their race and with the information we will go to insurance companies who do not give us insurance and tell them that these are the numbers of people affected and we need support,” she said.
Masamo added that the lack of accurate statistics also accounted for proper distribution of much needed drugs for patients in the country.
The trial phase of the project will cover Nairobi and if it succeeds she will go on to other parts of the country.
Masamo was elated to find that she was going to get about Ksh. 58 000 (500 Euros) from 1% Cheetah fund crowd funding initiative from the Netherlands.
The latter was a bootcamp held at the iHub in Kenya and where the winner Roy Mwangi who sourced Ksh. 32000, the largest amount was awarded with Ksh 58000.
“The money will be used to cover our travel cost. I have been doing studio shoots and a lot of our patients can’t make it to site for various reasons such as being paralyzed or sick. For me to be mobile, I will need fuel cost and driver,” said Masamo.
After Kenya ,Masamo will be heading to Uganda, Tanzania, Nigeria and Ghana.
Well wishers can also contribute via Mpesa through paybill number 891300 Warrior project.
