Sudan Chapter, Chair
A citizen of Sudan born in 1995, Rowan Elmustafa has been suffering from lymphedema since 2010. After 3 years of endless, futile doctor visits as well as numerous tests in Sudan, she sought medical care in the United Kingdom. It was in the UK where she came to find out she was suffering from lymphedema. With very limited knowledge on the topic, she had no idea what the condition entails. She felt alone despite being surrounded by her supportive family and friends, as it seemed nobody knows how it really feels. Rowan was also struck by the lack of awareness about lymphedema when she asked her university to provide assistance during her exams, as she had to endure so much pain in order to write. But the school doctors did not acknowledge her need for assistance nor recognize her condition. Nonetheless, she pursued her education with no support and graduated with an Honorary BSc in Information Technology from the University of Khartoum.
Today Rowan is driven to become an advocate and raise awareness of this disease as well as establishing a network between medical practitioners, patients and parties that can provide support for both. Additionally, she wishes to shed light onto this unexplored field in Sudan in the hope to bring relevant parties to adopt education and research on lymphedema.
Most importantly, she wants others suffering from lymphedema to find the adequate support they need and to know that they are not alone.