When growing in an African set-up, there are many stories children hear about life, only to later learn they were myths and misconceptions.
One greatly misunderstood condition is sickle cell anaemia. This is a severe hereditary form of anaemia in which a mutated form of haemoglobin distorts the red blood cells into a crescent shape at low oxygen levels. It is most common among those of African descent.
Ivy Nabwire, 28, grew up with the disease in a community where people thought it is the preserve of children from rich families.
“I felt stigmatised in our own house because my siblings did not know what this disease is,” she said.
Nabwire, 28, a sickle cell 1 warrior, says she was born a healthy child but today, drugs have become part of her meal.
“At the age of three years, I became sickly. A family doctor told my parents I was suffering from sickle cell anaemia after observation and advised them to put me on treatment immediately,” she said.
Nabwire did not know she was a sickler until she was 10. She became so curious to know and understand what the disease was all about and therefore, she started reading a lot about sickle cell stories.
She fell sick on a weekly or monthly basis. It made her skip Class 5 because of the continuous crisis, and her legs were too weak to support her movement.
When schools opened after the third-term break, she went and did her Class 6 interview, which she passed and was allowed to proceed.
Upon reaching secondary school, Nabwire fell sick again and skipped her Form 2 class.
“I fell sick and my mother did not know I have low blood count, so she was managing my condition from home. I was walking with 1.3 pints of blood, I used to hallucinate a lot,” she said.
Later in the same year, a wound occurred on Nabwires leg. The doctors told her it was an ulcers wound, which is similar to a diabetic wound and is difficult to heal. This confined her to a wheelchair for some time.
She went back to school, did her interview before being allowed to proceed to Form 3. She passed but in Form 4, the wound recurred, forcing her to do her Form 4 exams on a wheelchair.
“There is a time in 2016 I dressed my wound, which worsened after joining campus, on my own for one year because the doctors wanted to dress it," Nabwire said.
She said the wound had dug deep into the bone, and the doctors advised her parents to amputate her leg.
REJECTION AND STIGMA
After college, Nabwire had high hopes of getting a job, but due to her health condition, no one was ready to listen to her when she is sick.
“After college, tarmacking out here has been hell for me. You get sick for two months, you are fired because you are a sickler. Something which has made me not disclose my health status because I'm afraid of losing my job,” she said.
On social media, she posts sickle cell stories but makes sure that all her colleagues and bosses are not her friends.
Nabwire has formed different WhatsApp groups of sicklers to create awareness about the disease.
“Stigma is very high. Many children in the community do not go to school because they are sickler, and the parents are ashamed because of the perception the community has. Our families also get tired because they overspend on hospital bills,” she said.
The government has not supported much. The only thing which has been provided to them is guidelines on how to live with it, she said.
“Sickle cell anaemia needs specialised clinics, where you can go for treatment. Because it does not have a total cure since it is an inherited disease and not an airborne disease,” she said.
Nabwire said getting medicine has been the greatest challenge. She gets hers at Moi Teaching and Referral Hospital in Eldoret because in Mombasa, it is only available in Pandya Hospital, which only gives the drugs to people with insurance cover, and the cover can also be rejected if it does not have enough funds.
You get sick for two months, you are fired because you are a sickler. That has made me not disclose my health status because I'm afraid of losing my job
Lack of blood banks in Kenyan hospitals is also a challenge to this group of people, especially during an emergency of blood transfusion.
The sickle cell anaemia warrior said there is not enough information to make people understand what the disease is and that it is inherited. “People lack knowledge and that is why they judge us,” she said.
Doctors say sickle cell pain is 10 times labour pain. Yet in most cases, patients have to queue when they visit hospitals and wait for hours as they bear the pain.
“The painkillers that relieve that pain are very minimal, and if you take a lot, you become an addict,” she said.
Morphine and Bethadin are very strong pain killers, but doctors often do not understand patients' need for them.
“That is why we are amplifying our voices that doctors and nurses need to be trained and stop judging us that we are addicted to the drugs.”
The disease also hurts love life. Nabwire said as a girl, she has faced rejection from her male friends. No one wants to have a relationship with her due to her health status.
“Immediately you disclose your health status to men, they feel like you are a burden to them,” she said.
“Others think that you do not want to give birth naturally because there is this belief that a sickler cannot give birth in a normal way. We have been traumatised as young ladies to get in relationships.”
We want to tell the world that we are normal, it is just that we are living with a manageable condition and we can give birth in a normal way.
IN SIMILAR BOAT
Betty Sharon, executive director at Collaboration of Women in Development, said there is a second type of sickle cell anaemia that many health professions are unaware of.
She said the difference between sickle cell anaemia 1 and 2 is the first category is worse at a younger age, while the second is mild and becomes worse at an older age.
Sharon said she was diagnosed with sickle cell anaemia 2 at the age of 32, when she visited Australia for a workshop.
“I grew up without any health complications but in my 20s, I felt sick. I did not have enough blood in my body, which to some point was associated with witchcraft by my community," she said.
Sharon, who also did not understand what was happening to her, one day shared with her friend while in a workshop and the friend advised her to go for a full body check-up.
After the check-up, she was told she is suffering from sickle cell anaemia 2, a rare condition that happens at an older age.
Sharon was given two options to manage her condition: either go for medicines, which were expensive, or take up a special diet. She chose the diet.
“In many cases, people live with sickle cell anaemia 2 two without knowing, until they age and die. The disease has signs but they are mild and they only become worse as you age,” she said.
Sharon urged people to go for frequent check-ups to know about their health status to avoid giving birth to children with health conditions.
“There is a time in my life I had ulcers and arthritis, which took me long to manage until that time I started eating food as medicine and not medicine as food,” she said.
She said people need to prioritise affordable diets, which includes fruits, organic food and food rich in iron and minerals. For example, spleen, which you should eat at least three times a week, and do not overcook it.
Sharon said in Kenya, many people, including medics, are unaware of sickle cell anaemia 2.
“When I was getting my treatment in Australia, the doctors told me that sickle cell anaemia is prevalent in Africa, but people are not aware of it. As for me, initially, I was treating these opportunistic diseases and yet I am a sickler,” she said.
She said in Kenya many people lose their lives with sickle cell 2 without knowing. She recalls how she used to feel before being diagnosed with the right disease, and relates to the many cases people have died complaining of.
MYTHS AND MISCONCEPTIONS
Many communities lack knowledge on what the disease is all about, so everyone has a different perception of it.
Nabwire said there are people who believe it is a cursed disease found in rich families.
“Lack of knowledge in the community has created so many stories. Other people believe that when a person has sickle cell, they cannot live for more than 18 years,” she said.
Parents also face rejection for giving birth to sickler children because our right to health has been neglected, she added.
“We have a right to health just like PWDs, who are getting free medication. So the government should also give us free medicine. They should treat our condition just like other conditions,” Nabwire said.
Research in the Coastal region found that in every 100 infants, 8.5 per cent are born with sickle cell. In Kisumu and Busia county, 21 per cent of 100 infants are born with the disease.
Kenya needs sickle cell clinics and the provision of platforms to create awareness of this disease to the community.
Nabwire, who is using the hydroxirea drug, said it is hard to get in chemists. She urged the government to ensure it is available in all chemists.
Edited by T Jalio
