Access to support and information – MS South Africa

Information is not easily accessible and there are no MS information centres. MS South Africa decided to try and improve the situation. They set up two Facebook Groups (one open and one closed) to serve as an online support network for people affected by MS.

MS South Africa used neurologists, doctors and word of mouth to try to track down every person with MS in South Africa so they can get access to the groups. Non from MS South Africa said, “Everyone with MS has at least a mobile phone and it is the mission of the society to connect every one via Facebook and Twitter to be a part of the group. The group is a safe haven for People with MS. You can have a good old rant, or rave and get some support from people who ‘Get It’.”

MS South Africa works hard to protect their group members. Whatever is discussed in the group stays in the group, so people can speak their minds without fear of reprisals. MS South Africa also remind their members that the group does not replace medical professionals; they just offer practical experience, support and love. They have a set of rules that encourage mutual respect and protect members from misinformation and limit posts by external bodies, such as those promoting particular medicines or therapies. They moderate the group carefully to ensure that the rules are being followed. By doing this MS South Africa have created a resource for access to information that wouldn’t otherwise be there.

Some of the members have told us about the impact the group has on their lives.

Lynda from Edgemead in the Western Cape of South Africa says: “The group adds a great deal of value in that the members understand and can fully relate to the frustrations that we all share. Most days there is something new that has popped up and at least we can discuss what we have read. It’s great to know that I am not alone with the MonSter.”

Anne Moon wrote: “The ‘MS’ers Facebook Forum’ is the most important entity in my private life and it’s where I spend most of my free time. The group is comprised of people at different stages of the disease, some with early stage MS, some with advanced MS, some newly diagnosed, some whose MS journey traverses 3 or 4 decades. Collectively the group is a fountain of knowledge and wisdom. I have always believed that knowledge is power and, for me, therein lies the greatest value of the group. It is an extremely active group and, because the members hail from different time zones, there is never a time when the site is quiet. I can use my smartphone to interact with group members at any time of the day or night and receive a response within minutes.

“It’s an enormous privilege to be part of this extremely supportive and inspirational group of people. Because the group is so diverse, there are always others who have insights or tips you would never have considered on your own. You can speak your mind openly and there is no topic that is too sensitive. This group has also been very beneficial and very healing for my mental health.”

Bernard tells us: “Both posting my own questions and experiences and reading the stories of others have taught me more than any encyclopaedia article can ever teach me. It has shown me how to pick myself up after I stumble (figuratively and literally). I have cried with some members and I have laughed with them, celebrated in their good news as they have shared my triumphs.”