Living with Sickle Cell: Arrey Echi Agbor Ndakaw's shares her journey

The Centers for Disease Control and Prevention defines Sickle Cell Disease(SDC) as a group of inherited red blood cell disorders. Where healthy red blood cells are round, and move through small blood vessels to carry oxygen to all parts of the body, in someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome and stroke.

Sickle Cell Anemia is not easy to manage; studies have revealed that it is common throughout much of sub-Saharan Africa, with 12-15 million people living with it and up to 3% of births in some parts of the continent are affected by it. However it remains a low priority for many health ministries. Arrey Echi Agbor Ndakaw, an Intellectual Property Officer (IPO) in a private law firm in Yaounde - Cameroon knows the real cost of living with sickle cell anemia, having lived with the condition for over 30 years.

Arrey Echi Agbor Ndakaw (above) was diagnosed with sickle cell anemia at the age of two. Since then, her parents, siblings, family and friends have been supportive of her in the phase of numerous medical worries.

She explains, “Yes, I grew up with my parents and they along with my siblings, have remained my number one cheerleaders. They instill confidence in me looking beyond my condition and seeing light where others saw bleakness.” The challenges of a sickle cell patient are many; Arrey Echi says she experiences episodes of pains - crises.

“This occurs because our red blood cells have a shorter life span. They take on sickle shapes making it difficult for blood to circulate, thereby blocking circulation especially around the joints hence, the pain. Malaria, headaches and others come most often.”

Many patients deal with psychological and emotional pain as sickle cell patients but Arrey Echi is out of that, “Psychologically, I am perfectly okay. The love and unconditional support from my family and friends and their acceptance made me the balanced person I am today. However, even with this love, there’s stigmatization and discrimination from people who attribute our condition to witchcraft.”

Arrey argues, “What you cannot change, you learn to live with it. How you choose to deal with it however, determines the way you see life. Staying angry, bitter or blaming others will not make my condition go away. Acceptance goes a long way… I accepted my condition but I didn’t wallow or have time for pity parties. I choose to stay positive and to make the most out of life one day at a time.”

“Sickle cell patients need not be ashamed to speak out and they shouldn’t let anyone put them down. Taking life as it comes, I encourage them to stay positive and dare to dream,” she adds.

Talking about dreams…Arrey Echi is not married but she is all positive about marriage, “I believe many of us dream of wearing that Cinderella dress in our life time but again, in our case with Sickle Cell Disease, social constructs and perceptions make it difficult. Again, were there is life, there’s hope. That may come or may not come but life sure goes on.”

Arrey Echi Agbor studied Women and Gender Studies with Sociology and Anthropology at the Undergraduate Level in the University of Buea – Cameroon. She has a Diploma from the Pan African Institute for Development - West Africa (PAID-WA) Buea in Development Studies and Human Resource Management.

She loves writing and has published extensively with the Cameroon Concord News Group. She has a blog on which she writes during her leisure time and advocates for Sickle Cell using her experience. She prefers online sensitization. “Long before Sickle Cell Day on June 19th, I do a lot of online sensitization which usually ends with a workshop. I started doing this in 2016. In 2017, along with a workshop which I participated in, I did an online colour awareness campaign.

"It simply means I wear red and/or black throughout the month of June to raise awareness on Sickle Cell Disease. That’s because these are colours linked to awareness on the disease. I also took a picture daily and posted on Facebook with some simple messages on the theme “Break The Silence…Be A Sickle Cell Voice” with the hashtag #BeASickleCellVoice aimed at educating others about the disease.” Arrey Echi states that more people join her online movement daily.

“In future, I hope more ideas will come in. The important thing is to keep people informed about the condition and what we experience,” she adds.

Arrey however has some sad memories; “I had a wound while I was in Lower Sixth. It resulted from an accident…a simple scratch. However, poor handling led to it becoming an ulcer which is recurrent and drains me and my family, causing emotional, physical and psychological pain.”

One more word for Sickle Cell patients from Arrey Echi, “Take care of yourself by staying warm; avoid strenuous activities, eat healthy and stay hydrated….”

Read more about Arrey Echi journey from her blog.

Editor's note: This story originally appeared in CRTV in 2017.