This morning, Alice, Katie, and Lauryn went to Freetown to meet with Hidden Voices, a magazine that posts quarterly to advocate for silenced groups. All of their proceeds go to helping others. Some of their sections include features, opinions, game changers, and women empowerment. The women empowerment section usually covers widows and teen mothers’ stories. We had reached out to them for a meeting prior to arriving in the country because we noticed they highlighted many healthcare issues such as mental health and malaria on their website.
During the conversation, they informed us that two past staff members had sickle cell disease and they provided them with free healthcare including sickle cell screening. We also found out that they worked closely with Kadie Deen, the founder of Sickle Smart Foundation. She has provided stories for them to write articles about and has also written some herself. After discussing their work, they asked us a few questions about whether their current perceptions of sickle cell disease were true, showing the lack of knowledge in the general public about this illness. They asked us whether or not you could “beat” sickle cell disease and how a mother with the disease could prevent her child from contracting it. Through these questions, we gained insight on the perceptions and beliefs surrounding the disease among the locals here. We answered in a respectful way while still giving them the correct information. We finished the meeting off with pictures, which they posted on Facebook!
In the afternoon, Anjali and Aiden interviewed at the Egyptian Medical Center and ABD hospital, which are both private facilities. The Egyptian Medical Center is funded by an Egyptian NGO. Additionally, it has a pharmacy and a laboratory within its facility. We talked to a medical doctor, Dr. Balde Amadou, who was educated in the neighboring country of Guinea. His understanding of sickle cell disease was more detailed than many others that we had interviewed; he knew it was a result of a problem in the blood. While he was not aware of the difference between HbA and HbS, or that HbS red blood cells take a sickle shape, he knew of anemia and diagnoses the disease by hemoglobin count. He mentioned that his sickle cell disease patients come to him after being diagnosed at a hospital and complain of joint pain, bone pain, fever, and they are typically skinny. Similarly to what we have heard from previous interviews this week, he stated that individuals younger than age 25 come into the hospital around every week with painful complications while those older report less frequent complications and make less hospital visits. For his sickle cell disease patients, he prescribed folic acid and aspirin, stating aspirin is the best for short term relief.
The next stop for Aiden and Anjali was ABD hospital, where they met the owner of the hospital, Dr. ABD himself. He went to medical school in Malawi and studied conventional/western medicine. He began with an introduction of common diseases that he treated at his facility, including malaria, typhoid fever, HIV, Hepatitis (Referred to as the silent killer). When it comes to metabolic diseases, he treats his patients with hormones. ABD Hospital also dealt with hernia surgeries and injuries from trauma – such as broken bones and fractures from vehicle accidents.
Dr. ABD has a very thorough understanding of sickle cell disease, as he learned about it in his medical school curriculum. In his explanation of the illness, he stated that it was an inherited disease from individuals that are carriers of the trait or have the disease. He stressed the seriousness of sickle cell disease and the lack of facilities for screening in Sierra Leone because symptoms are also severely impacted by malaria, typhoid, other infectious diseases, and malnutrition. In his opinion, the key to solving sickle cell disease is to prevent two carriers of the disease from getting married and having children, which is similar to family planning. For his sickle cell disease patients, Dr. ABD prescribes them folic acid, multivitamins, and penicillin for the bone pain. To avoid malaria from worsening the symptoms of sickle cell disease, he also prescribes prophylaxis. He emphasized that in severe cases, children with sickle cell disease suffer from femur head necrosis and osteomyelitis. In addition to the sickling test, we learned of an old method used to diagnose: the patient’s finger is tied with a rubber band for five minutes to deprive oxygen from the blood in that region of the finger and pricked, the hemoglobin in the blood is then analyzed under a microscope.
Dr. ABD also shared that although he grew up surrounded by traditional health practices, he now believes individuals should be cautious. In traditional healing, there are no pharmaceutical companies utilized to analyze the chemical compounds and formulas to confirm efficacy and optimal dosages. We were also informed that not all pharmacies in Sierra Leone supply reliable drugs like the ones Dr. ABD prescribes to his patients. These pharmacies sometimes sell “fake drugs” or “alternatives” in order to continue making profit for their business. Overall, Dr. ABD gave our team excellent insight into sickle cell disease in Sierra Leone and how medicine in West Africa differs from that of other countries around the globe. Another key takeaway that stuck with us was the idea that innovation and creativity are key when dealing with extreme resource limitations – a very important reminder when pushing our project forward.
Our second adventure in Freetown was with two of Dr. Jaja’s students – Isatu and Zainab. A coordinator and nurse, respectively, they work on sickle cell disease research with Dr. Jaja. We met them at the World Hope office in Aberdeen and were able to learn a lot from them! Their primary research goal is to compare bacteria of sickle cell patients with healed, unhealed, and no leg ulcers to find a correlation between the two factors. Both Isatu and Zainab were very knowledgeable on sickle cell disease- where it comes from, how it is passed down, and common treatments. They both acknowledged that there is still a lot of misconception about the disease within the community. They mentioned the use of ties and ropes to keep sickle cell disease patients still during a pain crisis, even today. Dr. Jaja taught them everything they knew about the disease, but they said most of the general public knows little to nothing about the science behind sickle cell disease. They told us that sickle cell disease must be known and were both very passionate about the possible distribution of a device like ours. Another interesting thing learned from these two women was in regards to the stigma surrounding sickle cell disease. While our team knew of and prepared for this in fieldwork, we were yet to hear of it. They said generally people with wounds (can be a symptom of sickle cell disease) are considered bad luck and often called “sickly.” In their experience newly diagnosed sickle cell patients are often scared and sometimes want to give up by waiting to die. This struck us hard and will serve as a strong motivator for our team to push forward and diligently pursue our end goal.
Our visit with Dr. Jaja’s students was the last of the day. Thankfully, our luggage was also in Freetown! The three of us journeyed back with all of our luggage and made it to Makeni just three hours later. The views along the drive were beautiful despite the rain. Everyone was thankful to have their luggage after 4 days of wearing the same clothes. We also got all of the materials for our test strips that were also in our bags. We are hopeful they will still work despite the unideal storage temperatures they were kept at.