by Monicah Mwangi
At only 11, Bannel Ochieng can almost feel his mother’s pain. Born with sickle cell anemia 34 years ago, his mother Ruth experiences pains which are unbearable, even to her young son who is in class five. Bannel breaks down every time he tries to describe his mother’s episodes of pain, also known as sickle cell crises. Ruth Auma is a sickle cell warrior, in the sickle cell community’s terminology, who has lived with the disease all of her life.
Ruth, personable, warm and welcoming, lives with her family in Nairobi’s Ngumba Estate, about six kilometers from the Central Business District. She limps slightly, one of the results of her disease. “I wasn’t born like this, my right leg developed a problem due to severe crises and the bones deformed,” she says, adding that she cannot wear short dresses or skirts or tight trousers. Ruth says her crises always concentrate on her legs.
Her one-room house is neatly kept with black and white covers arranged on the sofas. It is a Saturday afternoon, family day. Her husband Richard Ochieng is tending to their youngest son, Brandon Ogonji. “I have always taken care of my children and done everything seen as a woman’s duty, especially when my wife gets a crisis,” he explained. “I wash clothes, I cook, I change diapers, I bathe my son, I go to the market and even do the dishes. I am always on her side when she is in pain,” he said.
Sickle cell disease is one of the most common inherited diseases (affecting an estimated 60,000 Kenyans), and pain is the most notable symptom of the disease. Where typical red blood cells are round, the cells are shaped like half-moons in sickle cell patients. The cells also become hard and sticky and have difficulty moving through the body, getting clogged, breaking apart and causing pain.
Periodic and severe episodes of pain affect a patient’s life and well being unexpectedly from time to time. “I think I had the worst child life. I grew up experiencing severe crises and I had to drop out of school,” said Ruth, who did not go to high school.
Despite her parents taking her to different health centers, Ruth could not get access to the right pain relief medication, and she resorted to taking weak painkillers and letting nature take its course. “Pain is the worst thing that can happen to you, and especially if you are a child without any understanding,” she said.
Even at her age, Ruth finds it difficult to describe what the crises feel like. “You have to experience it to know it. The pains are so bad I cannot begin to describe. I get so confused, I don’t know what I want. I find myself lying on a cold floor and, worse still, I start crawling outside in the middle of the night.” She says at one point her neighbors thought she was a witch.
“I hate it when my mum is in pain, most are the times I cry with her,” said Bannel amid tears. He does the little that he can to help relieve his mum of the pain. “I give her hot water as well as help dad with some house chores.”
It was not until later in life that Ruth was told what she suffered from and that it is a condition she will live with for the rest of her life. “It was the most depressing moment of my life. I went through emotional pain, but I later picked myself up and decided to tackle it head on.”
She changed her lifestyle and watched her diet, while supplementing the pain spells with painkillers. For almost 27 years, Ruth kept her condition a secret for fear of being rejected by her friends. “I used to operate a fruit kiosk and many customers would confront me demanding I see a doctor every time my eyes turned yellow,” she said.
Ruth met her husband 13 years ago and, though he knew Ruth had a medical problem, he never thought it was sickle cell. “She would experience really severe pains but I was always there for her,” said Richard.
Ruth’s cousin would be the one to break the sickle cell news to him. “She approached me and asked if I knew what Ruth suffered from. I said no, and she dropped the bombshell, adding that I should break up with her since sickle cell patients don’t get children and, if they get pregnant, they die when giving birth,” he remembers.
He confesses that it was shocking, but since he is a trainer and counselor about HIV, he managed to confront it. “I loved my wife and could not imagine losing her. We talked about it and agreed that we would try to conceive, which we did within a year,” he said.
They welcomed their first born son 11 years ago, delivered normally and without complications. They are currently proud parents of two boys, the last born being a year ago.
“I give my wife all the support that I possibly can. She still experiences crises, especially after child birth, which we manage with painkillers like brufen and betaphyn,” he said.
He remembers one time the crises were unmanageable, and she had to be rushed to Kenyatta National Hospital where she was injected with a strong painkiller that had her sleeping almost instantly. “She was injected and the pains were gone, but she had to remain in the hospital for six days,” said Richard.
She attends a clinic at Kenyatta National Hospital, the biggest hospital in Kenya, where she mostly gets pain killers. “I am currently struggling with a skin condition which is taking the better part of me. My skin is itchy and has turned black and I always have to be fully covered to avoid stares,” she said. Ruth has not been able to attend the clinic for a while now for lack of finances.
“My husband lost his job last year, and we have been surviving on the bare minimum which he gets when he is called in for short time trainings,” said Ruth. She takes care of the house and the children.
She confesses that she has the best husband who has been supportive even in her very low moments. “Richard does all the house chores and lets me rest when I am in pain. He is my all at that very depressing moment. He has pursued me to come out and start creating awareness on the disease and that’s why I opened up to my best friend about my condition three years ago,” she said.
For his part, Richard advises the public to love and support sickle cell patients and avoid the stigma. “All they need are strong pain killers and love. I avoid stressing my wife as much as possible. They should also stop stigmatizing themselves and accept their condition and work towards managing it,” he said.
Bannel has undergone the sickle cell test and doctors confirmed that he is not sick but that he is a carrier, meaning that if he marries a woman with sickle cell, some of their children will have the disease. “We are yet to have our youngest tested, but we believe he is ok since he has been healthy for the one year he has been with us,” said Ruth.
Ruth maintains a very small circle of friends, “I love keeping to myself, as long as I have my husband and my children, I am good.”