My battle with sickle cell disease

Teresa Ouma, 34, has had to manage the harsh symptoms of sickle cell anaemia since she was a girl. She shares her experience with Christine Odeph.

I am the only one in a family of six who has sickle cell anaemia. As a child, my parents didn’t really discuss it – they just managed it as best they could - but I was the child who was always unwell. They were more lenient with me. I would be exempted from certain chores, especially during cold season.

One time I forgot to do my homework. As punishment, the teacher used a ruler to hit the back of my hands. My hands developed what is known as dactylitis (painful swelling of the hands and feet due to blockage of blood flow). By the time I got home, the swelling hadn’t gone away. That was the first time I became aware that I was different from other children. To date, not all my fingers are the same size or shape.

One erratic symptom of sickle cell disease is debilitating pain when the body is in a crisis. I would spend a week in pain, and another week or two in recovery. So I would miss out on almost a month of school as a child. The attacks are different each time. But for me, it mainly comes at odd hours, especially at night. I could go to bed fine, but wake up in great pain.

Delayed puberty

In high school, what started as a simple cut on my leg became ulcers that never went away for close to two years. The scars on both legs are still visible today. Another side effect of having sickle cell anaemia is delayed puberty. It was depressing to see that everyone was developing breasts and starting their period while I wasn’t. I felt strange. My period eventually came when I was 21.

At times, the crisis pain is mostly manageable with medication at home. It can occur on days where I have pushed my body beyond its limits or whenever it gets cold. If the pain persists even with strong pain medication, I have to go to the hospital because it could be an indication that something is seriously wrong. Sometimes, it can get so bad that I can’t even hold a cup, laugh, speak or even go to the toilet on my own. After some crisis attacks, people like me even need physical rehabilitation to regain their motor skills because it can get bad and destroy your nerves. Sometimes, we need blood transfusions.

I went through acute chest syndrome – the worst kind of crisis twice in my life. The first time I thought I was dying. When it happens, you can’t breathe properly, meaning limited oxygen on a body that is already on low supply. In such a case, if you don’t meet a smart doctor, you will die. Once, I was on a church trip to Eldoret and made three mistakes: not carrying medication, travelling to a cold, high altitude town without consulting a doctor and sleeping in a poorly ventilated room with six beds and a single window far from my bed.

The following morning in church, I became numb, I couldn’t breathe. I really can’t describe the pain. It was so bad that I couldn’t open my mouth to speak to the person next to me. I sent him a text telling him to get me out of the church. He was confused at first but when he saw my face he know something was wrong. Together with another person, they led me out. I was gasping ‘painkiller’, but nothing they gave me worked – even an opioid. By the time I arrived at the hospital, I was grey. They had to put me on oxygen immediately. I was admitted for three days. As soon as I was stable enough for travel, the doctor insisted that I had to return to Nairobi because of the climate.

Unemployable?

I deliberately chose to study fashion and design in college because, the truth is, getting employed with my condition in Kenya would be tough. Financially, no one can realistically afford to have sickle cell anaemia. Many times I have had to ask for early discharge due to the cost of medical care. I wish the Government could step in and subsidise the cost of care for chronic illnesses or pre-existing conditions. I have easily accumulated bills of Sh150,000 in three days. It is tough even with insurance because it is not uncommon to be covered for up to half a million shillings, yet the company pays only part of a bill, leaving you to pay the rest. This has happened to me many times.

People who have sickle cell anaemia don’t need to be sheltered or handled with kid gloves. Parents who have children with it should try to let them live normal lives.