Mohamed Abohagar: creating a network for change through social media

Throughout his life, Mohamed Abohagar has taken a positive view of haemophilia. Despite missing many days of school due to bleeds, he went on to gain a university degree. His positivity today hides the trauma he went through 14 years ago: in 2006, Abohagar’s younger brother, who also had haemophilia, passed away following a brain haemorrhage. This experience proved to be a turning point for Abohagar.

Abohagar recalls the day he took his brother to the hospital with a brain bleed. Once there, he found there was neither the knowledge nor the treatment that could help him. In the period after losing his brother, he realised he didn’t know anyone he could reach out to or who could relate to what he was going through. By 2010, this sense of isolation led to the idea of creating a group for people with haemophilia.

The power of social media

It was important to Abohagar that the group should be accessible to people across Egypt. As a regular user of social media, Abohagar was aware of its power in spreading messages and creating change, prompting him to turn his thoughts to Facebook. There, he found there was a small haemophilia group based in Alexandria. After numerous talks and visits, Abohagar joined with them to seek ways to attract new members, soon doubling their numbers from 10 to 20. Over time the group expanded to include more and more provinces. Today, the group encompasses more than 5,000 members from all of Egypt’s 27 provinces.

The Facebook group is more than a support forum for its members. Members have agreed roles and responsibilities – for example one member translates the latest scientific research into haemophilia to ensure all members can keep informed about the condition. The group also raises awareness of haemophilia beyond its members. As well as flagging issues and topics through hashtags, its activities enabled it to connect with more traditional forms of media, leading to interviews with some of the biggest names in Egyptian broadcasting.

Raised awareness leads to action

Their combined efforts drew the attention of two key stakeholders: medical representatives from the Egyptian Society of Haemophilia (ESH) and healthcare authorities. In 2013, the first NNHF supported project in Egypt increased the active involvement of people with haemophilia in the organisation. The Facebook page built on this by providing a direct route of communication between the medical community and those with haemophilia across Egypt, enabling them to tailor ESH efforts to improve the knowledge of healthcare professionals. “Because the ESH’s doctors started to know about the problems posted on the page, they started to set a plan…to organise medical or educational convoys for both patients and doctors,” explains Abohagar. He also believes that the awareness created amongst healthcare authorities has had a substantial impact in creating improvements to haemophilia care policies between 2011 and 2019.

It is clear to Abohagar that the success of the group is due to its members passion for working hand in hand to drive change. After two members attended a NNHF leadership skills workshop in 2018, they have attracted and trained many more youth leaders from across Egypt through the NNHF Egypt 3 project. “From all provinces there appeared young adults who were motivated to help and they started spreading in provinces to raise awareness.”

A story of friendship

Abohagar is testament to the importance of sharing stories within the haemophilia community and beyond, “As a person with haemophilia, I usually talk about what I see myself. Because I am an eyewitness, I have to share my testimony.”

One of the unforeseen outcomes of this group is the creation of not just a network, but of friendship. Before his brother passed away, Abohagar describes himself as having little involvement with haemophilia. Now, when talking about the haemophilia community in Egypt, he proudly proclaims, “Thankfully we’re now so interlinked…Whatever province I visit in Egypt, my brother is replaced by ten wherever I go.”