Demystifying Misconceptions About Sickle Cell: Arrey Echi’s Life Battle!

 

To anyone familiar with the social media landscape in Cameroon, Arrey Echi is a household name. Growing up as a child was not a bed of roses, especially living and schooling in a community where no special attention is given to people with disabilities. As a child, Arrey Echi was diagnosed with sickle cell anemia, which is said to be the most severe form of the disease. Before finishing primary school, she lost her hearing, which has affected her speech. In addition to a life-time genetic disorder she had to deal with, facing stigma from society, like most people living with sickle cell marked her childhood. But that did not stop her from “speaking” but this time around through writing. It all started with a blog, then advocacy and today she leads an association: Joy2Endure Foundation. The graduate of the University of Buea is based in Yaounde where she works and lives independently, after her family reluctantly decided to give her some breathing space. The award winning international advocate is acclaimed worldwide for her bold strides in demystifying misconceptions about sickle cell through her story. She happily received The Advocate Newspaper in her house, to launch the maiden interview for Women & Girls.

In her own words, Arrey Echi, the award winning sickle cell warrior, blogger & international advocate said” We need society to be open, tolerant and understanding”

 

Read on!

 

 

 

You are very active on social media. However, the month of June is usually very colourful especially the nature of your posts and photos. What does this month signify to you?

As you have noticed, almost 80% of my posts on social media are about something related to sickle cell. In 2015, I began writing in my blog as a way of demystifying misconceptions about sickle cell. I write throughout the year, but in the month of June, my activities are particularly intense. That is because on June 19, the world celebrates sickle cell day. It is a day set aside by the UN, not to celebrate pain or challenges that come with living with sickle cell but to raise awareness, help the public change their perception about sickle cell. This is why I went into advocacy in the first place. June became a crucial month of my advocacy. Normally from the first to the 18^th of June, people are active, preparing for sickle cell day but I decided to use the entire month as my own period of intense awareness.

 

For people to understand they need knowledge. What should anyone know about sickle cell, and why it is important?

What pushed me into advocacy in the first place is the fact that people have a broad misconception about sickle cell. For example, many believe that sickle cell is ‘witchcraft,’ that children born with sickle cell are ‘witches’ sent to ruin their families. Others believe that people living with sickle cell cannot amount to anything because they ‘live only for 21 years’. These and other misapprehensions, make people living with sickle cell go through a lot of stigma and discrimination. So I try to make people understand that sickle cell is a genetic blood disorder, you cannot contract it from anyone except your parents. If your parents have the sickle cell gene and you get ‘s’ from both of them, you are born with sickle cell. People living with sickle cell can be whatever they choose to be. All they need is support, love; people should see beyond the sickle cell and accept them for who they are as valuable contributors to the society. Also, 21 is just a figure, it is not the life span of people living with sickle cell. I am above 21 and know many warriors who are older than me. These are things I want people to understand about sickle cell: the medical, emotional and financial challenges are many. I believe that if we talk more, by pushing these challenges to the front, it will help them live as normal as possible.

 

Based on your experience, what has been the response from family, the Community about your health condition?

Stigma is one thing that everybody with sickle cell will have to experience at one point in their life. Because you have to meet people who do not know anything about sickle cell and are not willing to learn. It is difficult for someone who thinks sickle cell is ‘witchcraft’ to look beyond that and not stigmatise us. While I was growing, I lost my hearing and some people used to call me ‘mumu’ (dumb). Back then I did not like it, now as an adult I joke about it. But as a child, it hurt! Not to me specially, but generally, some people don’t want their children to even play with children with sickle cell; they believe that we are ‘half-die’, or that we can contaminate them. Some warriors face a lot of breakups because their partners or parents say they don’t want (them) to marry people who can ‘die very fast’. In my case, it did not affect me that much because my family helped me see that I matter. They have been my number one support and cheerleading team. They looked beyond the fact that I don’t hear well and they pushed me to be who I am today. In the course of my advocacy, I have received so much support that I just feel overwhelmed. For instance, this year I decided to support warriors fight Covid-19, so I planned events and posted online; the support that came made me to go beyond the target number and places. I see how the campaign is changing people’s perception totally about sickle cell. I have support from my family, social media community but the outer community needs to be educated.

 

In what ways are people living with sickle cell different or do they live like everybody?

Actually, there is no fundamental difference between someone living with sickle cell and someone considered as ‘normal’. We may from time to time slow down because we experience what we call sickle cell crises, which may cause us to spend more time in the hospital than the average person. But we live life normally, we cook, go to school, work; but to be able to do these we need the support of the entire society. We need society to be open, tolerant, understanding; we need them to look beyond the pain and see our unique individual potentials; see us as valuable members of the society with something to give back. If the society continues to treat us like outcasts, it becomes difficult for us to blend in and bring out our potentials.

 

Are there challenges related to living with sickle cell?

People living with sickle cell have a huge challenge getting into the job market. Many lack jobs not because they are unqualified, but because they meet employers who are not willing to give them a chance. People who see them and just believe they will be a liability. As such, many hide the fact that they are sick. Some have to get up with overnight pains, yet force themselves to go to work because they are afraid to lose their job. For others, when the pains become unbearable and they land in the hospital, they feel fortunate to be alive but also worry about the possibility of losing their job. This worry is not for nothing; it has happened to many especially those who have bosses who do not understand their struggle. You find many sickle cell warriors who are single, not because they don’t want to raise families. It is simply because society does not want their children to marry them. Financially, sickle cell drugs are not subsidized. I have a drug I take every day and a packet lasts less than two weeks. Without it my situation deteriorates. The price fluctuates, I bought a packet at one time at FCFA 12 000. How many people can afford that? I work; I have family and friends who support me sometimes. Even so, it is difficult because if the price was to remain FCFA 12 000, that would mean buying every two weeks. That is just one medication and you have to take it year-in, year-out, not everybody can afford it. That is why many are always sick, in the hospital because they don’t have the means to buy drugs that can moderate their crises. This is something society has to help us talk about.

 

What about success stories, are there any?

Yes, living with sickle cell is not all about pains and hospital tests. It is challenging, yes; but this makes us resilient against life’s troubles. Many warriors are breaking barriers every day. Some meet the love of their life, get married and raise children. Others are working, have good jobs with bosses who prefer to see the individual and not the illness. They are doctors, journalists, writers, whatever profession they want to be. It all depends on what you want your life to be. You can focus on the pain and wallow or use the pain as a stepping stones to achieve your goals in life. In a way, I feel people living with sickle cell are more empathetic and sympathetic because the challenges they face make them to be readily tolerant and understanding of other people. If I had a way to change my life, I don’t know if I would prefer not to live with sickle cell. Whether I like it or not, it shapes the way that I am today. It helps me to look at the world in a way different from people considered as ‘normal’. The challenges are there, but there are also positive moments. (To be continued in the next edition)

 

Interviewed by Laure Nganlay, Freelance reporter

 

*Arrey Echi Agbor-Ndakaw: Spirit Awards Encourager Awardee; Digital Ambassador & Voice of the Future graduate at Wolrd Pulse. Also, International Advocate of the Year 2019 at Sickle Cell 101