“Be caring, proactive and keep going!”
Harry Mayeah Koroma shares his experience on working to establish basic haemophilia care in Sierra Leone.
As a practising physiotherapist, Harry was puzzled. In 2021, after providing therapeutic massage to a boy with a swollen knee for three weeks and with no sign of improvement, he advised the patient to consult a doctor. Weeks later, the patient’s family called from Nigeria, where the boy had been able to finally get diagnosis. Harry was caught of guard when he learnt that his patient had haemophilia. In his quest for answers about haemophilia, he visited healthcare centres and spoke with several medical professionals to understand what they knew about haemophilia and if diagnosis and treatment were available in the country. Unfortunately, the outcome was very unsatisfactory. When he realised that knowledge about the disease and care for people with haemophilia were very limited, he expanded his search to the internet. By googling the boy’s symptoms, he learnt that haemophilia can cause swelling of the joints. To his astonishment, no one in his country seemed to be informed about bleeding disorders. So, Harry reached out colleagues in Nigeria, where his patient was finally able to obtain a diagnosis.
Embarking on a journey of discovery
Along the way, Harry was shocked to discover that despite 34 suspected cases and some 680 people expected to be living with haemophilia in Sierra Leone, there were no facilities in the country able to confirm a diagnosis. No healthcare professionals had received specialist training, nor was there any health policy or budget allocated for bleeding disorders.
“This country is extremely poor, and nearly half of the working-age population engages in subsistence agriculture. Five different languages are spoken, but English, as the official language, is the language of education. Therefore, there is little awareness of haemophilia.”
Due to the lack of awareness and education, bleeding disorders are often perceived as a sign of weakness, or worse.
“One woman in our community had been managing her bleeds on her own, without a doctor or nurse to provide information or care, for twenty years. She was close to divorce, as the husband’s family believed her to be involved in witchcraft. Thankfully, by educating the family we were able to help this patient obtain treatment, and stay with her husband.”
Forming a patient organisation
In May 2021, Harry helped establish ‘Frontiers for Hemophilia and Bleeding Disorders Sierra Leone’ (FHBDSL), a patient organisation that now has around 30 members and two chapters, in Freetown and Porto Loko district. He is hopeful that this association will soon be accredited by the World Federation of Hemophilia to enable members to receive life-saving humanitarian treatment donations.
Harry’s commitment to helping people in his community led him to reach out further afield to learn more. In 2022, he set out to reach the closest neighbouring country where English is also an official language. After a four-day trip by bus he arrived in Banjul, The Gambia, where he was inspired to learn how the patient organisation has approached challenges similar to those in Sierra Leone. He also overcame the language barrier to connect with members of the bleeding disorders community in other West African nations such as Guinea.
Through his online research, Harry learned about the work of the NNHF. He dug deeper to learn more and was encouraged to submit a project application in partnership with Dr Mavolo Toure from Connaught Hospital in Freetown. The NNHF Council approved the project, and the team began working in 2022 towards establishing basic haemophilia diagnosis and care in Sierra Leone.
First steps towards basic care
Today, thanks to their dedication and with support from the NNHF, the first basic haemostasis laboratory has been established in Freetown. In-depth training of four healthcare professionals including a doctor, a nurse and two lab technicians has been successfully completed in Bloemfontein, South Africa.
“Until recently we had no way of confirming a diagnosis of haemophilia. Now, thanks to this project with the NNHF, we have 11 people whose haemophilia has been confirmed by laboratory analysis. The problem is that we have 26 others who are experiencing bleeding but still have no diagnosis. Unfortunately, we have no way to diagnose other bleeding disorders such as Von Willebrand disease.”
Harry’s advice to others
“My advice to anyone starting out on this journey is – keep going! The road won’t be easy, and you cannot afford to have naïve expectations in a country that is poor and where people don’t have enough to eat. You yourself will have to be the first volunteer and be willing to help in any way you can. People need to know that support for haemophilia is there, but you must be proactive to reach out and find it.”
The project team continues to raise awareness of bleeding disorders in Sierra Leone. They are collaborating on training with hospitals in South Africa while also pursuing a partnership strategy with The Gambia, Liberia and Guinea to further strengthen the capacities of the patient organisation.