Breaking the Silence ... #BeASickleCellVoice ... The Campaign and The Workshop.

Posted July 13, 2016 from Cameroon
Messages around the hall.
Sickle Cell Day poster
Sickle Cell Day poster (1/6)

'A journey of a thousand miles always begins with a step'

One week after completing my eight (8) week digital empowerment and leadership training at World Pulse, I embarked on plans to get my Digital Action Campaign (DAC) in motion. June was the proposed start month of my campaign and time was limited. I have been very comfortable doing my work behind the scenes, so it was going to be a big challenge going to the field for the first time with my goal of breaking the silence and stopping the stigma and discrimination that people with Sickle Cell Disease ( SCD) live with every day.

I planned to hold a workshop on Sickle Cell Care and Management. I have never presented or organized a workshop before. But I thought as soon as I said, "I want to organize a workshop," bingo! Things would fall into place.

Reality check!

The more I brainstormed with friends and family, the more I realized just how much of a novice I was in these matters. In fact, I felt like I was just taking that first tentative step into school, utterly unprepared despite my obvious excitement.

I could either go back into my comfort zone and continue my activities behind the scenes, or I could take the leap of faith, backed by determination to carry on. Determination and leap of faith won despite all, something that I am very thankful for today.


I started by asking the Dr Therese, Chief Medical Officer (CMO) of the Etougebe Baptist Hospital, Yaounde if they could assist me in hosting a workshop on Sickle Cell Care and Management in their hospital. When she gave me the green light, I approached the Administrator who reaffirmed their willingness to assist. One major hurdle tackled. I had a venue and the assurance of Drs to speak on the workshop. Next stage was to start sensitizing people. I did that mostly by word of mouth, placing notices at strategic locations around the hospital and by regularly updating my Facebook page about the workshop.

It was few weeks to the chosen date that I felt like giving up. The response was kind of discouraging in the beginning. Nevertheless, I pressed on and when a poster was posted on Facebook talking about the workshop, things started heating up and more and more support started coming in. My trepidation gradually turned into excitement. To prepare myself more I decided to run a one week campaign during the workshop week.


World Sickle Cell Day was on June 19th, a Sunday, making it difficult to organize any activity. Thus, most activities to build awareness were carried out before or after the 19th. I ran my campaign from the 13th to the 19th of June. I was not out there telling people to do this or that. I just decided to update my Facebook page daily with different pictures of me in Red. As it is well known, colours have been used to champion causes. Many are aware of pink for breast cancer and green for kidney disease but very few are aware of red and black for sickle cell. I opted for red. I love the lively, vibrant colour of red. Each day, I wore a different shade of red, took a picture of myself and posted it on Facebook with a few introductory words and the hashtag #BeASickleCellVoice. I had fun doing all this and one of my colleagues served as my unofficial photographer. It was quiet thrilling to see many more join me in wearing red and using the hashtag #BeASickleCellVoice. It was a great success, as more than 17 people joined me in wearing red. Mrs Inez Kalle joined for the whole week. Others sent me private encouraging messages, telling me they were in red but not posting on Facebook. I plan to repeat this again next year and I am positive many more will join in. Where there is life, there is Hope Eternal Sure!


As more people joined me, preparations heightened. Suddenly, we were on D Day, June 17th. Thanks to my boss, It was an all day in the hospital getting the hall ready and as the start time neared, my tension grew. Of course, I am well aware of the so called African time but it was discouraging to see just about a handful of people, not even close to my target number of 20 present.

After the opening ceremony by the moderator and welcome speech by the CMO, the workshop started with a handful of people but grew to about 60 before the end.


Dr Kelly, who is in charge of the Sickle Cell Clinic of this hospital took us through some medical aspects we as parents and warriors should be mindful of: avoiding cold drinks and baths, drinking lots of water and staying hydrated, having a regular visit to the Dr for checkups to always ensure all is well.

Anne- Chantal, one of the key resource persons and media personnel was instrumental in the support. Also a warrior, she wowed the audience in talking about her life as a warrior and stressed a few important points, such as knowing how powerful the mind is, we as warriors should use it positively. She further stressed the need for parents to be positive towards their kids by training them to know their capacities and their limits which help them manage their conditions well. There is no need to carry negativity and add to the strain of the disease. There was so much more she said which resonated very well with the parents and warriors present.

I met Mrs. Olivia Acha Morfaw one week before the workshop and she threw her full weight behind me. It was in the course of the meeting that I came to know she runs an NGO dedicated to supporting sickle cell patients: The Cameroon Sickle Cell Organisation (CAMSICO). I had never heard about the NGO but I was happy to know there is someone out there doing something about us. In her speech about what they do, she asked a very pertinent question: If the government can give free drugs to HIV patients and anti Malarials amongst others, why can’t they do same and provide free pain killers for sickle cell patients? The NGO is new and needs a lot of support but they are passionate about what they do.

Parents present were called upon to tell their stories and share their experience living with sickle cell warriors. One could not help but admire the courage of the parents as they shared their stories. One recurring regret was ‘Had I Known’ which highlights the importance of doing the SS test (Electrophoresis) to know our genotypes before marriage or plans to have kids.

At the end, yours truly said a few words of appreciation in which I also stressed just how important Voices of Our Future (VOF) was in preparing and empowering me for this.

Water was distributed to all warriors present and at the end, light refreshments were offered to participants.


Our people say ‘one hand cannot tie a bundle.’ I felt the true meaning of these words during the workshop preparations and executions. None is an island and therefore, this could not have been possible with the immense support I received. Yes, it was my idea but I needed support to bring the idea to fruition and how thankful I was to get the support in bucketsful.


By brainstorming with others, I got ideas on how to organize and break down the workshop. Prominent amongst these were Mrs Edith Ogen, Mr Hansel Arrey, Mrs Prudencia Asanga, Mr Honore Fon and Ms Besty Etoh. Brainstorming with Ms Ogen helped me get the poster by a very good designer, Mr Penn Derrick. With Ms Besty, we were able to trade words to choose the best ones and her word ‘Be SickleStrong’ was so on point that I felt in love with it and since then, has been one of my favourite catch words.

Ms Kathleen Ndongmo, renowned media strategist and fondly known as Africa’s Tweet Queen was there to use her expertise to make the workshop a success. Not only did she do a terrific job at moderating, she also was able to moderate in such a way that everything went on even when some speakers didn’t show up at the last minute. More to that, she kept updating about it on twitter and ran an opinion poll asking if people knew their genotype.

Ms Diane Mankah, talented in such matters, was on hand to help me in crafting out the letters to write ‘World Sickle Cell Day’ and also in writing the words we spread out around the hall for participants to read and know some ABCs about Sickle Cell. She was equally on hand to help me decorate the hall in time for the workshop. Prominent among those words were ‘Be Sickle Strong’, ‘Know your Genotype’, ‘Break the silence’, ‘Keep Standing Tall’.

Mrs Nina Forgwe –Bayen, Mr Jerome Ngoh and some of my family members pitched in financially which helped me obtain some much needed materials for the workshop. Nina was also very active on twitter that day talking about the workshop.

And of course, the formidable CMO and staff of the hospital were so helpful.

Too many people supported that time will fail me to name all. But I will forever be grateful for the support, the cheering and everything I got which made this successful. I cannot conclude this without mentioning my Voices of Our Future mentor, Ms Debra, who has remained involved and supportive throughout.


There were so many take home lessons from this maiden workshop experience. Some of which include;

  • My target population was everybody: Sickle Cell patients, their parents and the community at large. I expected at most 20 people and when just a handful of people were present at the beginning, I panicked. It was a huge relief to count 60 plus people at the end, far more than I expected. I learnt something valuable. Things may not always turn out the way we want at the beginning but the end is what we should aim for and whenever possible, take deep breaths and press on.
  • The support I received was so overwhelming and I learnt that people will always be ready to help IF we ask for their help.
  • I had a lot of things planned out but was held back financially. I had financial support but it couldn’t cover everything I wanted to do. What I learnt here was that it is important to always be flexible and have a good plan B. If your plans seem lofty, do not be afraid to start small because it is always better to take that first step than to give up.
  • One major setback was the language barrier. Some people were lost in the language differences until we could find someone to interpret. In the future, I will have to make sure that an interpreter is present throughout.
  • No help is too small. Acknowledge all and appreciate all. You can never tell when an idea or something may become handy.


Despite the fears and drawbacks at the beginning, everything went on quite well and we were all happy with the outcome. One valuable lesson was that at the end of the workshop, we saw parents and their children change their perspective about living with sickle cell disease and many present were happy to learn something new about sickle cell. A fait accompli and a great motivator to press on.

Comments 4

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ellen zaroff
Jul 14, 2016
Jul 14, 2016

Arrey - Echi

Thank you so much for sharing this wonderful story. It is so interesting because you speak about the steps it takes to set up an information session like this and sickle cell is often I think one of those diseases people don't learn about, even when they have it! You are so right that no one hand can tie a bundle and it is one voice which can start the ball of change rolling. I am sure the people who participated are so grateful for your enthusiasm and organization. It is such a wonderful task to enlighten people and let them be heard.

Jul 14, 2016
Jul 14, 2016

Dear Ezaroff, Thank you so much for taking the time to read and for those encouraging words. You are right, sickle cell is not often spoken about enough, leaving many people ignorant and suffering in silence. This was an ice breaker and I am glad it went through despite the short comings. If my enthusiasm affected others positively, I can only be happy. Thank you once again.
Jul 14, 2016
Jul 14, 2016

It's so great to hear how you were able to alter the perspectives and eliminate stigma surrounding sickle-cell anemia among numerous families. I especially love how you began the initiative #BeASickleCellVoice and inspired others all the while! I look forward to reading more about your future endeavours. 

With kindest regards,

Helen Ng

Jul 14, 2016
Jul 14, 2016

Dear Helen, Happy to hear from you again and thank you so much for the kind and encouraging words. I am glad #BeASickleCellVoice resonates with you as that is my campaign slogan always. hoping for more of such and more positive feedbacks as we continue to change mindsets and stop the stigma against SCD warriors. Thank you once again,