My struggle against sickle cell disease: Kenya

Teresa Adhiambo Ouma. She struggles with sickle cell anemia.

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

I am the only one in a family of six people with sickle cell anemia. As a child my parents did not really discuss it – they succeeded as well as possible – but I was the child who was always unwell. They were milder with me. I would be exempt from certain tasks, especially during the cold season.

Once I forgot to do my homework. As a punishment the teacher used a ruler to touch my hands. My hands developed what is known as dactylitis (painful swelling of the hands and feet due to clogging of the blood stream). By the time I got home, the swelling was not gone. That was the first time I became aware that I was different from other children. To date, not all my fingers have the same size or shape.

A capricious symptom of sickle cell disease is disabling pain when the body is in crisis. I would have a week of pain and another week or two in recovery. So as a child I would miss almost a month of school. The attacks are different every time. But for me it is mainly at strange hours, especially at night. I could go to bed well, but wake up with a lot of pain.

What is a sickle cell?

Delayed puberty

In high school, what began as a simple cut in my leg swore that never left nearly two years. The scars on both legs are still visible today. Another side effect of having sickle cell anemia is delayed puberty. It was depressing to see that everyone was developing breasts and at the beginning of their menstruation while I was not. I felt weird. My period eventually came when I was 21.

Sometimes the crisis pain is usually manageable with medication at home. It can occur on days when I've pushed my body beyond its limits or when it gets cold. If the pain persists even with strong pain medication, I have to go to the hospital because it can be an indication that something is seriously wrong. Sometimes it can get so bad that I can not even hold a cup, laugh, talk or even just go to the bathroom. After some crisis attacks, people like me even need physical rehabilitation to get their motor skills back, because it can become bad and can destroy your nerves. Sometimes we need blood transfusions.

I have experienced acute chest syndrome – the worst kind of crisis I have had twice in my life. The first time I thought I was dying. When this happens, you can not breathe properly, which means that there is limited oxygen in a body that is already almost empty. If you do not meet a smart doctor in such a case, you die. Once, I was on a church trip to Eldoret and made three mistakes: not transporting medication, traveling to a cold city at high altitude without consulting a doctor and sleeping in a poorly ventilated room with six beds and a single window far from my bed .

The next morning in the church I became numb, I could not breathe. I really can not describe the pain. It was so bad that I could not open my mouth to talk to the person next to me. I sent him a text to tell him to get me out of church. At first he was confused, but when he saw my face, he knew something was wrong. Together with another person they led me out. I was aching for painkiller & # 39; but nothing they gave me worked – even an opioid. When I arrived at the hospital, I was gray. They had to put me immediately on oxygen. I was admitted for three days. As soon as I was stable enough to travel, the doctor insisted that I had to return to Nairobi because of the climate.

unsuitable to work?

I deliberately chose to study fashion and design at the university, because the truth is that it becomes difficult to work in Kenya with my condition in Kenya. Financially, no one can realistically afford to get sickle cell anemia. Many times I have had to request early dismissal because of the costs of medical care. I wish the government could intervene and subsidize the costs of care for chronic diseases or pre-existing disorders. I have easily collected accounts of Sh150,000 within three days. It is difficult, even with insurance, because it is not unusual to be covered for half a million shillings, but the company pays only part of an account, so you have to pay the rest. This has happened to me many times.

People with sickle cell anemia do not need to be protected or treated with children's gloves. Parents who have children with them should try to lead them a normal life.

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