Sickle cell-related stigma and discrimination significantly impact the health, lives and well-being of people living with the condition, especially the vulnerable population.
The disadvantaged members of the community diagnosed with Sickle Cell Disease (SCD) continue to face unfair treatment, rejection and even abuse from their families, healthcare and the workplace.
SCD is caused by a defective gene in the red blood cells that results in problems in the haemoglobin.
However, for Michelle Omullo, 29, who is a talented filmmaker, that will not let the daunting experience of dealing with SCD kill her aspirations.
The youthful warrior now uses film to create awareness of SCD with a mission to empower, enrich and educate underserved patients with the condition to reach their full potential and lead choice-filled lives.
“Sickle cell is a neglected disease with no financial allocation from the government, subjecting patients to financial drain when seeking treatment and purchasing drugs,” she says.
Omullo resolved to use her filming skills to shoot short videos and documentaries on sickle cell anaemia disorder, which she shares through her social media channels and YouTube to reach out to members of the public.
The initiative, she says, is intended to empower the warriors to speak out on their plight. At the same time, they sensitise caregivers, parents with children suffering from SCD, healthcare professionals and local leaders to come out and protect and advocate for the rights of the victims.
“My aim is to breathe hope to the many sicklers, especially those that the disease has caused an additional form of impairment, like stroke who are locked-up in the houses feeling depressed and discouraged,” she said.
Born and raised in Kisumu, Omullo, a fourth born child, is the only member of her family living with the condition. She was diagnosed with the disease at age three at the Kenyatta National Hospital.
Since then, she says she has never enjoyed her childhood and growing up into a teenager like the rest. One of her grievous ordeals with the disease, she says, was when she developed a mild stroke on her right side in 2020.
“I woke up one morning my right side feeling very heavy. Both my right hand and leg were very heavy. I tried using neurobionic tablets but it did not work. When I went to the hospital, the doctor said I had suffered a mild stroke on my right side,” she says.
She also doubles as a member of the West-Kenya Sickle Cell Disease Support Group where together with other like-minded individuals they champion sensitisation and awareness campaigns for the genetic disease in Kisumu.
Omullo has won the hearts of many with her determination to address the challenges bedevilling people diagnosed with SCD.
Her father passed on when she was 10 months old and was raised together with her two elder sisters and a brother by their mother, Janet Omullo, a retired primary school teacher.
Through support from her mother, Omullo attended African Film and Television Talent Training Institute in Nairobi, to pursue a course in film and TV production.
With support from Finix Entertainment – a film Production Company based in Kisumu, Omullo produced her first documentary titled Ray of Hope Sickle Cell Disease shot in November 2021.
The two-hour documentary is a synopsis of sickle cell disease, genotypic occurrence, treatment management process and handling of SCD warriors.
She thanks Benson Ogonda of Finix Entertainment for offering support and mentorship in her quest to create awareness through filming.
“The entertainment firm has assisted me with filming resources and they also do engage me occasionally for film gigs. For instance, they contracted me as an assistant producer in Tembe movie that premiered on September 4,2022,” she says.
The astute actor partnered with Peter Richie, an actor from Ghana, to shoot a short video clip titled Genotype.
“Genotype is a six-minute clip that encourages lovers to carry out a genotype test before getting married to be sure if they are carriers of the sickle cell traits or not,” she says.
The video, Omullo says, is ready for launch and will be released on September 30 during the celebration to culminate the National Sickle Cell Awareness month in Kisumu.
September is Sickle Cell Awareness month dedicated to highlighting the need for research and treatment, as well as amplifying support for patients battling SCD.
Dr George Rae, the CEO of Jaramogi Oginga Odinga Teaching and Referral Hospital, says a Sickle Cell Zero Movement involving various stakeholders has been established to eradicate SCD by 2040.
“We intend to mobilise and teach people that individuals possessing sickle cell trait should be counselled not to pair up with others to suppress the occurrence of the genetics and have a generation that is biologically free from sickle cell,” Dr Rae says.
According to experts, about 4.5 per cent of children are born with SCD, and 18 per cent of children are born with sickle cell trait in the western part of Kenya, while in Kisumu county, 20 out of 100 children are born with a sickle cell trait and are at risk of dying before attaining age five.
(edited by Amol Awuor)
