Reka Shakiralhamdi Latief: Self-infusion as a route to increased independence
Until last year, travelling for hours through heavy traffic to reach the local clinic whenever he had a bleed was the norm for 17-year old Reka Shakiralhamdi Latief. Reka lives in Bandung, Indonesia, a city whose traffic is worse than the infamously congested Jakarta. Reka was one of many people with haemophilia facing this challenge across Indonesia.
At the age of three, Reka had to undertake this journey on a motorcycle with his father whilst experiencing an intercranial bleed. The delay in receiving treatment was potentially fatal. Even upon release from hospital after 14 days, Reka and his parents still had to undertake the difficult journey every day for the following week, so that he could receive his treatment. From this point on for Reka, who has severe haemophilia A, this journey became an integral part of his life.
Empowerment through education
In 2019, Reka participated in a self-infusion workshop organised as part of the NNHF Indonesia 2 project by the Indonesian Society of Hematology & Blood Transfusion and the Indonesian Hemophilia Society. The workshop was one of a series being held across ten provinces in the country, as part of the project team’s objective to empower people with haemophilia and their parents, through education and skills development. The workshop changed Reka’s life.
A newfound confidence
“At first, I was scared to insert the needle into my arm, but the workshop gave me confidence because it was very practical and the nurses were very patient and supportive,” recalls Reka.
After the self-infusion workshop, Reka attended several supervised practise sessions with nurses at the hospital to ensure he would be able to correctly self-infuse. “Now I am less scared of having a bleed because I know I can deal with it at home and I don’t have to spend hours travelling to the clinic,” explains Reka. This has been fundamental in enabling him to live more independently and focus on doing the things he enjoys as a typical 17-year old – playing computer games, reading and teasing his sister.