Social, personal and professional Impacts highlighted in lived experience survey

April 11, 2025/Myasthenia Alliance Australia

Late last year, many people in our community participated in a survey conducted by Alexion Pharmaceuticals about the impact of generalised Myasthenia Gravis (gMG) on daily life and experiences with healthcare professionals. 
 
The survey found gMG has a significant impact on people’s social, personal and professional life with one in two retiring early. Restricted social life, loss of independence and the ability to plan activities were the most reported impacts.

Seven in ten people said they would like more support from the healthcare system. Help to manage flareups and better understanding of daily life with gMG from their specialist were top priorities. 

Read more in the summary below

Header: "The Impact of Generalised Myasthenia Gravis (gMG): A 2024 survey of 80 Australians living with the condition found" Section 1: Significant Impact on Daily Life 7 in 10 reported a high impact on their social life 6 in 10 reported a high impact on their personal life 5 in 10 reported a high impact on their professional life 1 in 2 had to retire early due to gMG A small illustration of people in various life contexts (e.g., socialising, working, carrying a plant box) Caption: Restricted social life, loss of independence and the ability to plan activities were the most reported impacts. Section 2: Unmet Support Needs 30% feel lost managing gMG 37% are not confident managing flare-ups 37% wish they knew more about gMG 35% feel they don’t have good control over their gMG Accompanied by icons (question mark, uncertain woman, books, caution symbol) Section 3: Healthcare Support 7 in 10 want more support from the healthcare system Visual of diverse healthcare professionals Footer: Alexion Pharmaceuticals logo, legal details, and reference ID: January 2025. AU/M/AIU/gMG/0002
Header: "They want healthcare professionals to have a better understanding of daily life with gMG" Quote: "Life with gMG is not smooth. You have no idea what each day is going to bring... Doctors have no idea about the lived experience so you can feel very much alone." Main Stats: 4 in 10 do not believe their specialist understands the impact of gMG on their daily life A third to a half of people said their specialist never asks about the impact on their social, professional, or emotional life Greater frequency of engagement with specialists is preferred Illustration of a person sitting with arms wrapped around knees, looking sad Quote box: “I think the biggest issue is …medical practitioners and related service providers have little to no knowledge of MG so it’s really difficult to get the appropriate support with any great level of detail.” Survey Demographics (bottom section): Gender: 58% female, 40% male Work status: 45% retired, 28% working, 19% unable to work, 6% other Location: 64% metro, 46% regional/rural Age: Pie chart showing respondents' age groups, largest being 61–70 years (35%) and 51–60 years (31%) Geographic distribution: Map of Australia highlighting states where respondents live – NSW/ACT 33%, VIC/TAS 26%, QLD 20%, WA 11%, SA 9%, NT 1% Footer: Alexion Pharmaceuticals logo, legal details, and reference ID: January 2025. AU/M/AIU/gMG/0002
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