Monday, day 8, was a very mellow day for all of GSIF. There were rumors of demonstrations and protests of the working class who had not been paid in months. Doctors, teachers, and other lower government workers were closing their businesses and going to the streets to display their very valid concerns. To stay safe, we all stayed at the hotel. Our team worked on plans for the coming days and finished analyzing our past interviews. The demonstrations were not violent so some teams were able to go out in the field later in the day. The day off was a nice way for us to hang out, catch up on work, and prepare for the busy day ahead.
Tuesday was our ninth day here and by far our busiest day thus far. We woke up early and drove to the Kono District – about 2 hours away. Sickle Cell Carers Awareness Network (SCCAN) is in Kono and they were gracious enough to let us talk with some of their patients. The founder of the organization, Sia —, has advocated for sickle cell disease in Sierra Leone after tragically losing two children to it. When her first two children died, she did not know of the disease. Their deaths were blamed on witchcraft which was faulted on her. Confused and lonely, Sia abandoned her third child to give them a long and healthy life without her. In her time away, she discovered SCD and connected her first two children’s deaths to the disease. Sia was able to reconnect with her third child and bring her to adequate treatment in the UK. From that point on, Sia has dedicated her life to reducing the suffering of SCD patients in her hometown of Kono and working to break down the stigma of the disease.
Our team split into three groups of two to get the most out of our day. Anjali and Katie did 14 patient interviews. Aiden and Alice concluded talking with the patients by doing 10 interviews. Lastly, Kathleen and Lauryn talked with 4 staff members and were then interviewed about the project to be on the Kono Public radio. The clinic we were at all day was an old dentist’s office that had been converted by Sia and her team to be the only SCD clinic in the area. They took referrals or walk-ins and had diagnosed around 2,000 people since opening. All staff members were volunteers and only paid when there was money to do so. The primary source of funding for medications and facilities was from Sia’s friends and colleagues in the UK. The passion of every employee was extremely evident and was inspiring for every single one of us.
Anjali, Katie, Aiden, and Alice met and conversed with 24 total individuals that were afflicted by sickle cell disease. The patients stressed the extreme burden that sickle cell disease has on one’s life, and they all spoke of how life-saving Sia’s clinic has been to them. Many of the patients told us how they have switched from traditional medicine to western medicine since coming to Sia’s clinic. Before starting medication, some would use boiled leaves or even rope to briefly relieve the bone pain. Their symptoms would be assumed to be those of malaria rather than sickle cell disease. Most patients stated that, while both traditional and western medicine has helped them to an extent, western medicine has been more effective in preventing severe bone pain from recurring in addition to relieving the pain. Some patients also mentioned how they were accused of witchcraft due to their disease, by their own families, friends, and significant others. One woman stated how her husband left her and her three children because they were suffering from the disease. Some mentioned how they were dropouts from school; one woman told us that she had moved her child between seven different schools, and another mentioned how no one at school wanted to be her friend. The strength and the courage of the patients we met were inspiring. They showed how sickle cell disease in Sierra Leone deserves more attention in order to truly help the people suffering from it.
The first interview Kathleen and Lauryn did was with Sia herself. After going through her story, we discussed the SCD clinic, her organization (SCCAN), and her hopes for the future. She talked about the clinic in a metaphor; it was a holding area for hope before the ship could come. She acknowledged a lot still needs to be done for the disease to be widely understood and for advanced treatment to be available, however, she viewed her clinic as a stepping stone. Her organization, Sickle Cell Carers Awareness Network, was another key part of the interview. It was created to advocate for those who care for people with SCD. The mission is to educate people on how SCD manifests/is passed down. Often, the mother of the child is blamed for the disease and accused of witchcraft. Sia emphasized the fact that it is both the man and the woman that pass down the disease to a child, no fault to either of them. Sia also went in depth about why she believed SCD was less known than other diseases around the country. The discussion of discrimination among diseases came up and she made interesting points about how racial discrimination and mindsets have made their way into the global sphere of health. Sia referred to SCD as the “silent killer” in Sierra Leone and was extremely passionate about changing this. Her goals for the future were to continue advocating for SCD and make it known so that her two children did not die in vain. This interview was by far one of the most impactful we have had and we assured Sia that we were on the same mission as her. She finished with the sentiment that if she dies today, she’ll die a rich woman because of all the people she has been able to help.
Kathleen and Lauryn interviewed 3 other staff members. They had various jobs at the clinic but were all equally as passionate about SCD. All three staff members emphasized the importance of knowing your genotype to better plan for the future and reduce the burden of disease. Considering our test also tests for the SCD trait, we were extremely pleased to hear that they had been sharing the importance of this. The other staff members had joined SCCAN in its early stage and only one had prior medical training. None of them knew exactly was SCD was before starting, but are now committed to sharing the truth. When discussing how to spread this knowledge, one staff member, Momodu, mentioned that word of mouth is by far the most effective. He mentioned that all you need is the finances and mobility to reach many people. This information is very important to us in regard to the implementation of our device and We are sure we will be using SCCAN’s expertise down the road.
Day 9 was extremely insightful and inspiring. We all learned many new things that will take us far in our research.