In June 2016, shortly after completing my Voices of the Future training on World Pulse, I organized my first Sickle Cell Workshop on Sickle Cell Care and Management. Getting timidly into unchartered territory, I set my target at 20 persons. How thrilling it was to get more than 60 persons attend that maiden workshop. Furthermore, not being used to using digital technology to promote my cause, I also carefully trudged into the first online colour awareness campaign for sickle cell. I did it for a week only. The support and positive feedback I got from these two events set the pace for something which has now become a month long activity every June, raising awareness and changing the narrative on sickle cell as the world commemorates World Sickle Cell Day every June 19th, a day that was set aside not to celebrate pain, but to raise awareness on a genetic blood disorder filled with so much misconceptions and taboo.
With lessons from these maiden events and good investment and preparation, the online colour awareness campaign has become one of the most vital and useful tools I am using to further my cause to #BreakTheSilence and #BeASickleCellVoice. And as the years go, more and more people are adding their voices, joining me to break the silence, becoming sickle cell voices. The feedbacks I have received over the years from people who tell me how my efforts have completely changed their perceptions about people living with sickle cell have continued to be a great moral boost.
For any who has been following the campaign, I am sure they could see how much of life and fashion I love and despite the challenges faced with living with sickle cell, I try to infuse that into my campaigns. Where many erroneously believe people with sickle cell must usually always look sad, disorderly and unkempt, infusing my positive outlook into my campaigns and my love for simple, elegant dresses has completely changed the game in this regard.
This 2019 campaign saw me doing it in the fourth consecutive year. It has been just as challenging as it has been fun. And with each passing year, I am encouraged by the support and feedback to keep it going as best as I can for as long as I have the stamina and means.
This year was special in many ways. I usually organize workshops where we raise and discuss issues people in the sickle cell community face and try to look for possible ways forward. However, this year, I decided to dare it and go out of the comfort of the workshop zones and try something bigger. After mulling the idea for some months and finally discussing it with Dr Budzi, the young dynamic doctor I have been privileged to work with for some time now and a few trusted friends, I or rather, we decided to take a leap of faith and try the idea… offer a free screening for sickle cell targeting at most 100 persons.
I agree, the available cash I had was enough to organize another workshop but not enough for a project of such magnitude. Yet, we planned and as June approached, took a great leap of faith and posted on Facebook, making an appeal for support. Friends have generously supported my activities all these years. However, this was the first time I openly appealed for support and I must admit, I had my fears and worries on how the reactions would be. The support that came through was amazing, far beyond my wildest expectations. It was both humbling, overwhelming and all I could say was I indeed have an amazing TRIBE of people behind me, who have been following my activities and would readily come in to see me soar. It was heartwarming.
As June 15th, the day selected for the screening approached, we had a new worry… if we would be able to screen all who showed up. You see, the flyer was shared multiple times around Facebook, other platforms, given to outpatients at the Etougebe Baptist Hospital, Yaounde etc, giving the free screening great publicity. We had to also use tact to be sure we screened only those we knew had no idea of their genotype. In all, we had about 150 persons present and in trying to avoid known sickle cell warriors present, we successfully screened about 85+ persons. We had both print media, private camera and TV stations present for the event.
While we were busy preparing for the free screening, the online colour awareness campaign was gathering steam. I with the help of some friends, came up with ideas on how to make it both fun and educative. This is how we came up with a few hashtags … #RedLipsForSickleCell, #BrightLipsForSickleCell, #RedTiesForSickleCell ( this had the men in mind so that they should not be left out) and people were encouraged to #DareItForSickleCell. Too many hashtags, everyone selected what appealed to them and the game was on. It was truly fun and the turnout was just as amazing. I would love to appreciate everyone on the World Pulse community who joined their collective voices in one way or another to make this a success. While I could count the number of people who attended the free screening to about 150 persons, it goes without saying that using technology (WhatsApp Status, Facebook, Instagram, appearing on TV to talk sickle cell and the screening event being shown by two TV stations, print media etc,) the campaign this year reached more people than I count.
I didn’t bag on falling sick but unfortunately, I found myself in the hospital after a successful June 19th campaign where my Tribe came out en masse to help paint social media red/black for sickle cell. This was like some kind of incorporating theory and practice in this year’s campaign. To crown matters, while at the hospital, I got notified that I have emerged winner of Sickle Cell 101 (SCAY19) International Advocate of the year. In all, the media coverage, the award, the hospital stay and above all, the overwhelming support received made this year’s campaign a great success and I am so looking forward to #BreakTheSilence campaign season 5.
Four impactful seasons gone, more seasons to follow until the silence is broken and the voices grow louder.