The following national organization provides information about MG, advocacy opportunities, and events for patients, among other services:
Point patients to support within the MG community
The largest, leading patient advocacy organization solely dedicated to finding a cure for myasthenia gravis (MG) while improving the lives of people living with the disease.1
Additionally, local and regional organizations may also offer support for your patients with gMG.
Take another PASS
To uncover the impact of recurring symptoms on patients with gMG, ask:
Considering all the ways you are affected by [gMG], if you had to stay in your current state for the next months, would you say that your current disease state status is satisfactory?2,3
The Patient Acceptable Symptom State (PASS) evaluation is a single-question score that has been validated in several chronic inflammatory diseases.2,3
Explore some frequently asked questions about living with gMG
Both genetic and environmental factors have been found to contribute to the risk of developing gMG. Variations of genes, including genes involved in immunity, may play a role. Sex hormones, particularly in women, may also influence susceptibility. Environmental triggers such as infections and cancer immunotherapies have also been linked to gMG.4
Diagnosis of generalized myasthenia gravis isn’t always easy, as many of the symptoms (such as fatigue or muscle weakness) can be attributed to other health conditions. In fact, in a European study using a peer-validated, cross-sectional survey of 387 patients with gMG, the average time from symptom onset to diagnosis was about 1 year.5
Raising awareness about the patient-perceived burden of gMG and treatment goals is essential for improving patient-clinician interaction, while also informing decision-makers, such as insurers, to ensure access to effective treatments for those living with gMG.6
The Myasthenia Gravis Activities of Daily Living (MG-ADL) and Quantitative Myasthenia Gravis (QMG) scales are two measures of symptom impact that can be used to determine how gMG is affecting patients. The MG-ADL is a patient-reported scale, while the QMG is a clinician-reported assessment.7
The experience of every patient with gMG is different, and the fluctuating nature of symptoms can make it hard to determine their severity. In a patient-perspective qualitative study (N=28), the majority (96%) of patients with gMG reported that the presence and severity of symptoms varied from day to day, or even over the course of a single day.5
Symptoms impact patients living with gMG in a variety of ways. They can limit physical activities, affect work and cognitive performance, force a constant state of adaptation, and affect mental health.6,8,9
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References: 1. Myasthenia Gravis Foundation of America (MGFA). Mission values and strategic plan. Accessed September 24, 2024. https://myasthenia.org/About-MGFA/Mission-Values-and-Strategic-Plan 2. Mendoza M, Tran C, Bril V, et al. Patient-acceptable symptom states in myasthenia gravis. Neurology. 2020;95:1617-1628. doi:10.1212/WNL.0000000000010574 3. Petersson M, Feresiadou A, Jons D, et al. Patient-reported symptom severity in a nationwide myasthenia gravis cohort: cross-sectional analysis of the Swedish GEMG study. Neurol. 2021;97:1382-1391. doi:10.1212/WNL.0000000000012604 4. Gilhus NE, Tzartos S, Evoli A, et al. Myasthenia gravis. Nat Rev Dis Primer. 2019;5(30):1-19. doi.org/10.1038/s41572-019-0079-y 5. Cortès-Vicente E, Borsi AJ, Gary C, et al. The impact of diagnosis delay on European patients with generalised myasthenia gravis. Ann Clin Transl Neurol. 2024;11(9):2254-2267. doi:10.1002/acn3.52122 6. Jackson K, Parthan A, Lauher-Charest M, et al. Understanding the symptom burden and impact of myasthenia gravis from the patient's perspective: a qualitative study. Neurol Ther. 2023;12(1):107-128. doi:10.1007/s40120-022-00408-x. Epub 2022 Nov 2. 7. Muppidi S, Silvestri NJ, Tan R, et al. Utilization of MG-ADL in myasthenia gravis clinical research and care. Front Neurol. 2022;65:630-639. 8. Law N, Davio K, Blunck M, et al. The lived experience of myasthenia gravis: a patient-led analysis. Neurol Ther. 2021;10(2):1103-1125. doi:10.1007/s40120-021-00285-w 9. Saccà F, Salort-Campana E, Jacob S, et al. Refocusing generalized myasthenia gravis: Patient burden, disease profiles, and the role of evolving therapy. Eur J Neurol. 2024;31(6):e16180. doi:10.1111/ene.16180. Epub 2023 Dec 20