Michelle Omullo is a story teller.
But a good percentage of her stories are about herself.
She discovered her sickle cell condition at the age of three.
People had written her off, claiming she could not attain teenage age.
But on January 5, this year, she celebrated her 30th birthday.
“This is a miracle,” she said.
Sickle Cell Disease
Sickle cell disease (SCD) is a group of inherited red blood cell disorders.
Red blood cells contain hemoglobin, a protein that carries oxygen.
In someone who has SCD, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky.
Ms Omullo, the last born in a family of three siblings was born and brought up in Kisumu.
She was raised by her mother, after she lost her dad when she was barely ten.
Her condition was discovered when she was three.
In 2010 August, she suffered a major stoke which affected her right limb.
Now a film maker, Omullo uses her space to advocate and create awareness on the disease.
While growing up, teachers and fellow students did not understand what SCD is, so they made fun of me
Michelle Omullo
“I don’t want parents to bring in children to the world who would go through this pain and yet it can be prevented,” she said.
Her life as a warrior has been filled with rocky slopes, she says.
“But by the grace of God, I’ve pulled through, he has done me well,” she adds.
She has lived through pain, struggles and fighting stigma.
“While growing up, teachers and fellow students did not understand what SCD is, so they made fun of me,” she recounts.
Beating stigma
During her primary school, she was bullied at class Four and Five.
In high school, it become worse, the pains increased.
Omullo had to miss school often.
She adds: “The stigma surrounding sickle cell has not been a joke, it still follows me upto now.”
This made her despise herself and later after Form Four, she had opted to be a secretary around Kisumu.
“I came out of my shell and studied Film and TV Production.”
To help reduce the burden the disease brings with it, Omullo started her own film company.
This was to reduce the struggles to get and keep employment as most employers do not understand the disease burdens and struggles.
Using film to create awareness
Through Victoria Youth and Film Empowerment she shoots and produces movies around SCD.
As the founder, she has over 35 members in director, scriptwriters and actors positions.
‘Ray of Hope’ is one of her documentary works.
The documentary features medical experts providing detailed explanations on the disease, treatment and management.
The movies are written with the target of creating awareness on SCD and providing preventive measures.
It was difficult to find partners in the industry which still experiences stigma and discrimination altogether,
Michelle Omullo
Omullo also has a support group called Western Kenya SCD support group.
Through the group, they meet as sickle cell warriors, caregivers and parents to provide support and learn from each other.
She says, it has really helped in their fight against pains and discrimination.
“It was difficult to find partners in the industry which still experiences stigma and discrimination altogether,” highlights the warrior.
With like-minded doctors and sponsors, Omullo has been able to steer her vision forward.
She has also produced an educative film called ‘Genotype in collaboration with Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH).
“We have also carried out zero sickle cell campaigns around Kisumu creating awareness,” she adds.
Currently, she is working on a documentary called ‘Wiping Tears’ which revolves around the struggles and prevention of the disease.
“When we work as a team, we can create awareness and be on the front-line,” she says.
Fighting SCD medically
According Dr Benard Awuonda, a researcher and SCD Clinic Manager at JOOTRH, the amount of research and therapies being made available is commendable.
In future, he says, bone marrow transplants currently done in Tanzania can be expanded to other countries.
To fight the disease, Global community can make these drugs available and chip in to support.
Let’s start from young couples who want to have kids coming for screening
Dr Awuonda
Dr Awuonda urges people to fight the menace right from its nonexistence.
“Let’s start from young couples who want to have kids coming for screening,” he said.
It should be mandatory for couples to have sickle cell screening, tests and counselling before marriage.
“Infants from date of birth to about six weeks of age should be brought for screening,” Awuonda added.
The screening is done for free and results given within two weeks.
He trashes the myths often told to the warrior that they can only live up to a maximum of 18 years.
He said when properly managed, one can live up to 90 years of age.
“We have a Nigerian lady who died at 93, lived happily and remained strong,” he said.
The disease has frequent attacks of pain and strokes.
Therefore, continuous proper medication is needed.
Cost of treating SCD
Omullo says, the cost of acquiring these drugs is too expensive.
“Being that I do not have stable source of income, paying my NHIF is a big struggle. I have to buy the medication from private hospitals,” she reinstates.
Drugs like hydroxyurea, zinc sulphate, folic acid, pen v and palodrine are costly and yet have to be taken on a daily basis.
Her family has been her main support through the struggles.
Living with the disease has not been easy, many have lost the fight.
Being that I do not have stable source of income, paying my NHIF is a big struggle. I have to buy the medication from private hospitals
Ms Omullo
However, Omullo says, “there is hope we can fight it, with the help of everyone out there.”
She encouraged fellow warriors to come out and fight the stigma saying through awareness, people will get educated.
As an advocate, Omullo urges young couples to test for their genotypes and heed to doctors’ advice.
She further advises parents that though SCD is draining because of frequent hospitalizations, patience is needed with the children.