Not only has she dealt with debilitating pain all her life, she has lost numerous friends along the way. Now, she’s using her voice to speak up for many who are still trying to find their own voice. Her pain is unbearable on most days, but she is determined to continue touching the lives of those living with sickle cell disease.
Jesscah Sharon Odhiambo was diagnosed with sickle cell disease when she was 3 months old, and vividly remembers spending most of her days in pain as a child.
“I was always very weak, and I couldn’t understand why,” Odhiambo told The Weight She Carries. “I knew something was wrong with my body. When I started to get older, my parents told me what was wrong.”
Odhiambo is the eldest of five children, and the only one in her family living with sickle cell anemia. She often felt lonely because she couldn’t play outside with her siblings or the other kids in her neighborhood.
“As I child, I tried to fit in. But as I grew older, I started to have more health problems. I had a lot of pain and was always in the hospital. People couldn’t understand and would ask me if I had been bewitched. I always asked God, ‘Why me? Of all the people in my family, why me?’” – Jesscah Sharon Odhiambo
Along the way, Odhiambo met other young people with the same condition. She made friends with many of them and the sense of community helped her get through painful and lonely moments.
Unfortunately, she lost many of those friends to the disease. One death, in particular, shook Odhiambo to her core. It was the death of her doctor’s son.
“I lost hope and thought I would be the next one,” she said. “His father was a doctor, but he couldn’t save my friend.”
When she went to college, Odhiambo found it difficult to adjust socially, particularly when it came to dating.
“That’s when I started having trouble with relationships because people felt they couldn’t date someone with sickle cell,” she said. “It was so traumatizing…feeling this pain, people talking about it and stigmatizing you because of your condition. I just needed them to love and accept me the way I was.”
Odhiambo said people often said they wouldn’t marry a person with sickle cell because they didn’t want to be with someone who was always sick and whom they couldn’t enjoy life with.
“Even if they have the money, they wouldn’t want to spend it on hospital bills for someone who is in and out of hospital all the time. And if they have children, their kids would probably have sickle cell,” she said.
Those years were tough for Odhiambo, and she wondered if there was a reason for her existence. She had lost so many friends and was still dealing with a lot of pain in her body.
“I felt like I didn’t belong here,” she said.
What she realized was that there were some people who didn’t understand the details about sickle cell, but those who did know still stigmatize people living with the condition.
It wasn’t until after college that Odhiambo finally began to accept her condition and embrace who she was.
“That’s when I decided to support other people living with sickle cell to give them hope,” Odhiambo said. “I wanted them to know that even though we are this way, we still have hope through God.”
Odhiambo founded The Jesscah Sickle Cell Foundation in 2015 and dedicate her time towards raising awareness in the community about the disease by creating events and talking to people in the community who are affected. She is also often invited to give a talk to people in hospitals.
“I’d also like to be able to provide drugs for people. There are many people in rural communities who can’t afford the drugs, and maybe that is what’s killing them. But I can’t do anything for them because I don’t have funds.” – Jesscah Sharon Odhiambo
In addition, Odhiambo is also the founder of Peperusha BINTI, an initiative that seeks to educate girls on menstrual education and adolescence. The foundation also offers sanitary napkin donations to rural primary schools in Kisumu, Kenya.
“Some of the girls cannot attend school because they don’t have access to sanitary napkins during their menstruation,” Odhiambo said. “So, I decided to support the girls by donating sanitary napkins to rural primary schools in the community.”
She collects what she can and takes the supply of sanitary products to the rural schools every two months. However, raising funds has been one of the biggest hurdles, she said.
“Only a few people donate, so I have to give from my own pocket,” Odhiambo said. “It’s been difficult. I don’t have donors to support me in this. I’m trying to find people who can help me. The few friends and well-wishers who give have been of help.”
Although there have been challenges, Odhiambo said she thanks God for bringing both her foundations this far.
What’s truly remarkable about Odhiambo is that she lends so much of herself to the needs of others while struggling with her own health problems.
“I have to avoid being cold because when I’m cold, my blood clots. When that happens, I have so much pain,” she said. “I need to be in open spaces where there is free-flowing oxygen. I also need to make sure I don’t feel too hot.”
Despite her best efforts to keep her body as comfortable as possible, the level of pain she experiences is often more than she can handle.
“I also get painful attacks that (occur) suddenly in my body,’ Odhiambo said. “Strokes are common with sickle cell. I have friends who are paralyzed because they had a stroke at some point in their lives.”
Despite what she’s been through, Odhiambo offers encouragement to anyone out there living with sickle cell disease.
“I want them to know that despite what they are going through, God is still there for them. I’m someone, like them, who has gone through the same things they are facing now, but I’m still here, and I’m still strong. I’m just here to give them hope,” Odhiambo said.
Odhiambo added that people can help by donating sanitary products for the girls and by donating money to raise awareness and provide medication for those living with sickle cell disease.
Her message to others struggling to come to terms with their diagnosis is one of strength:
“Hold on wherever you are. We never chose to be this way but it happened, so we should just accept it, live with it, and support others like us.” – Jesscah Sharon Odhiambo
To support either one of Sharon Jesscah Odhiambo’s foundations, contact her on the following social media platforms:
Facebook: Peperusha BINTI: https://www.facebook.com/Peperusha-BINTI-766858156830542/?pnref=lhc
Jesscah Sickle Cell Foundation: https://www.facebook.com/zwish777/?pnref=lhc
Vimbai E. is a content marketer, ghostwriter, and the founder of The Weight She Carries. With hundreds of articles and stories publishing online, in print and for broadcast, her love of language and storytelling shines through every piece of writing that bears her name.