‘When it comes to dealing with an unknown ‘enemy’, knowledge is always the best defence’
Sickle Cell Disease is a genetic blood disorder that affects people of predominantly African, African American, Caribbean, Middle East and Asian Communities. Nigeria, with the largest population of blacks in the world is said to have the highest number of people born and living with sickle cell disease. In Cameroon, the exact percentage of people living with Sickle Cell Disease (SCD) is not very clear though it is estimated to be about 2%. Due to the absence of this important information, SCD receives very little attention as a public health concern, though some doctors involved in the study and research of the condition and some individuals are working to change that. As a result of this huge gap, knowledge in care and management of the disease is sorely lacking, making many misinformed people to continue to see the condition as a taboo, resulting to stigma and discrimination against people living with SCD.
TARGET GROUP / TIME OF TRAINING
The community at large but most especially, I will begin with a small manageable group which will consist of:
- Sickle Cell Patients
- Care givers
- One or two medical practitioners
The training will be held in June. It will be part of a series of planned week long activities to go with my Digital Action Campaign of #BeASickleCellVoice which starts on Monday June 13th and ends on Sunday, June 19th, World Sickle Cell Day. It will last for 1 hour.
GOAL/ OUT COME
Participants will be able to understand the ABCs of the disease. This knowledge will empower them to easily identify possible trigger factors of a crisis and how to care for and manage a sickle cell patient undergoing crisis.
Participants will be able to understand trigger factors in a crisis such as:
- Extreme cold
- Menstrual cramps etc and what they can do to avoid or care for a patient in such situations.
The community outcome will be that, through this training, participants will be able to see things differently and thus, change their mindsets and demystify taboos surrounding SCD. This is because, if a parent comes to understand that cold would make his or her child sick, he or she will take steps to make sure their child stays warm during cold weathers to minimize crisis rather that attribute it to witchcraft.
I will use the WorldPulse Trainer’s toolkit. I will train in English. However, as a bilingual country and with me living in a predominantly French speaking culture, I will have to adapt my language either by including the common lingua franca ‘CamFrancanglais’ which is a mixture of English and French or ‘Pidgin English’ or secure the help of a volunteer interpreter who is perfectly bilingual and in case of a deaf, I would be able to speak and sign as well.
I hope to use my VOF stipend to get a Camcorder which will go a long way to help with recordings and audiovisual to make the message accessible to a broader audience.
I plan to get whiteboard and markers and [a packet of A4 papers or small pocket notebooks and pens, hopefully monogrammed with the campaign slogan #BeASickleCellVoice, and awareness brochures if I can get someone do it at a cheaper rate]. I hope with such souvenirs, people will be more inclined to speak out and join their voices in my drive to stop the existing taboo and stigmas against SCD.
I will approach the Medical Dr in Charge of a hospital noted for having sickle cell clinics to arrange for a convenient time and venue within their hospital premises. There are chances of having it for free or at a minimal cost. Light snacks and drinks will be provided. Limited Cash will be a major roadblock but, I will plan to do a little crowd funding to cover excess cost.
My plan to hold the training in June is double fold. The week the training holds is a week which heightens activities for sickle cell awareness. Also, the weather in Yaoundé will be ideal for sickle cell patients to venture out the doors without fear of experiencing a crisis. June is warm and friendly as compared to April and May which are cold and rainy. And a one hour program in the morning or afternoon ensures that everyone gets home after safe and sound.