FEATURED: BREAKING THE SILENCE: A Pioneer In Sickle Cell Awareness Shares His Story.

At a time when many people, especially parents were confused and ignorant about Sickle Cell, keeping the presence of a warrior in the family under tight lock because they attributed it to witchcraft or a curse sent to them by the gods and ancestors, One bold voice was busy trying to debunk the myths and break the silence. Today, he shares his story with us. Please read on and be inspired. I certainly was.

Joy2Endure (J2E): It is a great pleasure having you with us today sir and we especially appreciate you sharing your inspiring story with us. So can you please tell us who Mr Ashu Egbe is?

 Mr. Ashu Egbe (AE): I want to thank you very much for giving me the opportunity to talk about myself. It’s easier for other people to say who someone is because from one’s activities they will best describe you. Let me however try; I am a trained civil engineer living and working in Douala. I am happily married to my queen and God has blessed our union with 5 children. I am also a filmmaker.

Mr Ashu Egbe, Warrior Sir! Photo credits AE.

J2E: Five kids wow!!  We will come back to that.  As a trained civil Engineer and film maker, how do you balance your time doing both?

 AE: We all have 24 hours in a day; no one has an extra​ second. We are therefore supposed to set our priorities.  My family comes first, my paid job follows, and then my passion for filmmaking. Of course my activities in church and the communities too come in between

 J2E: That’s right we all have 24 hours. Setting priorities helps us make use of this to the fullest. The way you line your priorities can inspire many to follow suit. Talking about this passion of filmmaking, can you tell us a little about it? What inspired your passion in films?

 AE: I started writing (poetry and drama) while in secondary school. Later on, I realized that to give many people access to my works it’s better to have it on video especially since Africans don’t have a reading culture. So as an engineering student, I had the opportunity of taking short courses in film production. Interesting to note that my very first film, produced in 1991, in the UK was a drama documentary about sickle cell. This was broadcasted on the national TVs of 18 African countries.

 J2E: You are right on the mark about the reading culture and Africans. We strongly need to change that. I would say that was a huge success about your first film. Congratulations. I will love to watch it someday. I have noticed you talk about being a Sickle Cell Warrior. Is that what motivated your first film production on Sickle Cell?

 AE: That’s exactly what motivated me. Even my second film, that came 17 years after and titled “When the Heart Says Yes” had sickle cell as a sub theme. My objective is to produce films that educate and entertain. ( A trailer of the film is inserted here. More of his films can be found on UTube, enjoy). https://www.youtube.com/watch?v=6QDeIWIed4Y

 J2E: Edutain. I really will love to watch your films. Speaking about Sickle Cell, can you tell us what socio-economy and psychological challenges you face as a sickle cell warrior?

 AE: I am happy to have a very supportive family. Through the special favour of God, I have always had a good job with insurance cover so I have not really experienced any socioeconomic challenges different from what non sufferers face.  During my stay in Birmingham, England for my   university education and later work, I was not comfortable with the cold weather. So when in 1992, I resigned from a good job and abandoned my chartered engineering program to come back home, amidst the economic crisis, many did not understand. I listened to that small voice and today I don’t regret.

(Mr Ashu with his beautiful family. Photo credits.)

 More about challenges…I started an NGO on sickle cell awareness (Campaign Awareness for Sickle Cell known as CASC-Cameroon). For 3 years I coordinate this association. During this period, I encountered many bottlenecks, from administration and sometimes even from sickle cell sufferers, who thought I had funding and was using it to enrich myself. I was on the contrary spending my own money. When I got my current job and left Yaoundé for Douala, I decided to continue with the awareness drive but at an individual level. I just started my family and also needed to concentrate time for them. I believe I’m still reaching out to many people either through my films, social media, the church and my community.

 J2E: Supportive family, good job. Two things every warrior needs. Also, no regrets with moving back home, impressive! Let’s talk more about your family. You mentioned being happily married with five kids. Belated congratulations. Thatis a feat which has debunked myths around sickle cell and will no doubt inspire a lot of warriors to dream. What challenges do you face as a warrior father and husband? Are any of your kids SS?

 AE: Thanks for the congratulations; I will share this with Lucia, my wife. I thank God for using me to give hope to many warriors and parents of young warriors. I always end my presentations on sickle cell with my testimony. And I have seen many families change from the negative to a positive mental attitude.

When I needed to settle down, it was necessary for my then wife- to-be to take the electrophoresis test. We have been dating already and so, you can imagine the tension before the results were available. I remember her friends were worried that she would be a widow in her young age. Today, I know I will certainly die someday but it might not be due to sickle cell.

The rest is what we all know – five children who are carriers. As a parent I have the responsibility, with my wife of course, of giving the best home education they need. They too have to continuously be reminded of their status so they can make right choices in future; the right spouse.

 J2E: Amen to that and a special thank you to your wife Lucia, for seeing beyond the SCD and daring to find happiness and love with you. May you have more lovely years together. Thank you too for staying positive and daring to hope and dream beyond the social expectations. We pray the education you give your kids will help them make informed choices in future. Now to the next question… do you sometimes worry about not being there to watch your kids grow? If so, how do you deal with that fear? How frequently do you experience crises and what steps do you take to minimize them?

 AE: Until recently, the last three or so years, the fear will once in a while come up. I have now come to terms with the fact that I might die of something else. I somehow know what to avoid. Example is during the cold periods I take my walks in the afternoon and not in the morning. I have the Moringa plant in my compound and that’s what I have been taking as tea throughout the day. It seems to help and I have not been hospitalized in the last 3 years. When I feel stressed up in Douala traffic for instance, I take a pain killer in advance.

 J2E: Excellent care program you have there and it seems to be doing excellent work. Three years no hospital wow! Keep on keeping on sir. I love the idea of knowing what to avoid and taking necessary precautions. Talking about CASC I have never heard about it. I can understand how difficult it is to run a one man show. What motivates you to keep going, breaking the silence especially at a time many would rather shut up about SCD?

 AE: CASC was even legalised and we functioned between 1994 and 1998. There was no Social Media at the time so it’s not on the net but the reports of the yearly events are available.  I keep going on with the awareness campaigns because I think God has given me the opportunity to do so. It is like an assignment.

 J2E: It will be a pleasure to go through these reports someday. I applaud the fact that despite those draw backs with CASC, you kept on the awareness. It will be an immense pleasure if we get to work on this awareness project together some day.  Our last question for the day, what encouraging words do you have for warriors and warrior parents/ caregivers?

AE: I like your post on day 21 of your campaign. The myth about 21 and would like to reiterate that warriors are not condemned; God in His infinite mercies, created us all in His image. He created you and I with a plan. To warriors and parents of young warriors, I come with these words of encouragement that the same God who has seen me through tomy fifties, a husband and father of many children (including non-biological) will see them through. The good news is that sickle cell can be eradicated. This is possible if partners take the electrophoresis test before marriage thereby avoiding the union of 2 carriers of the sickle cell gene. ( Facebook link of Day 21 post inserted here :https://www.facebook.com/photo.php?fbid=1471157989573185&set=a.1452164118139239.1073741831.100000369932101&type=3&theater)

 J2E: Another amen to that, thank you sir. You are right, we are not condemned. We all have a purpose. 50s! Talk about HOPE!! Yours is one story that has defied and debunked all the myths about SCD. To make that eradication become a reality, we must sensitize. Thank you for adding your voice to this important work of educating and sensitizing the community. This is where we come to the end of the interview. Thank you so much for the valuable time you spent in sharing your story with us. I feel truly inspired talking with you and I hope this inspires many more who read this.

 AE: Thank you. I commend your efforts and can only wish you well for future campaigns. God being our helper, we should team up and make a louder noise…

 J2E: Amen! God help us loud may the noises ring! Thank you.

 I know I am still mastering this interview thing. Nevertheless, I felt truly inspired talking with this Warrior Sir. I do pray his story inspires some warrior out there.

Keep reading, keep commenting and keep sharing. We are inspired by your comments, thank you.

ARREY- E. AGBOR-NDAKAW

Author: ARREY - ECHI

I am a Sickle Strong Warrior and Advocate. Welcome to my space.

7 Replies to “FEATURED: BREAKING THE SILENCE: A Pioneer In Sickle Cell Awareness Shares His Story.”

    1. Thank you so much for stopping by to read Sir Ashu Egbe’s inspiring story. I pray too that it inspires many more far and wide. Please do stop by again.

    1. Thank you for stopping by. It really is an inspiring read. True, things have changed and people are aware of some things but many more remain ignorant. That’s why we have to keep talking about these situations. Do come again.

    1. His story is truly inspiring Sis.
      He more than debunked the myths.
      He inspires so many warriors to reach for the skies.
      I was just as inspired interviewing him.
      Thank you for reading sis. One story a time, we will break the silence and debunk the myths.
      Much love.

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