“You don’t know how you will feel from one day to the next or what the future holds.”
—Real person living with gMG2
A patient-reported outcomes (PRO) study demonstrated that 33-47% of patients with generalized mayasthenia gravis (gMG) were dissatisfied with their symptom management.1
gMG symptoms can go beyond the physical2,4
In addition to physical symptoms, patients report mental, emotional, and social impacts on their daily lives as symptoms recur.2,4
Mental4
...I do get depressed. Because I do feel like...something has been taken away from me.
—Real person living with gMG
Emotional2
I remember a time when I couldn’t go out for dinner with friends after the theatre because I was so exhausted. I cried a lot that evening.
—Real person living with gMG
Social4
Well, it’s impacted things with friends because like I said, my...my mindset on things have changed a bit...like seeing friends is something to fear and worry about.
—Real person living with gMG
In their words:
The impact of gMG on patients
The impact of gMG on patients
Symptoms of gMG such as difficulty swallowing, weakness in the extremities, and slurred speech can interfere with various aspects of daily life. This can be discouraging for patients, leading them to make significant long-term adaptations and adjustments.2,4
In their words:
The impact of gMG on patients
The impact of gMG on patients
In a workplace-focused study of 330 patients:
While nearly 78% of patients with gMG demonstrated minimal manifestations or were in stable or pharmacological remission, ~40% still reported having difficulties with activities of daily living (ADL) related to their job.2
While nearly 78% of patients with gMG demonstrated minimal manifestations or were in stable or pharmacological remission, ~40% still reported having difficulties with activities of daily living (ADL) related to their job.2
“You feel it from the moment you wake up and you have to adjust your routines and expectations; I live day by day. Those bad days you need to prioritize the most important activities, or the most basic, and try to work with your medication.”
—Real person living with gMG2
In their words:
The impact of gMG on patients
The impact of gMG on patients
Patients with gMG also reported living with the daily fear of suffering a potential exacerbation.2
“Whenever I think about joining in on strenuous activities with friends...I’m never sure how far I’ll make it.”
—Real person living with gMG2
In their words:
The impact of gMG on patients
The impact of gMG on patients
Open conversations with patients about the impact of gMG can reveal coping strategies they’ve developed for the unpredictability of gMG symptoms, such as lifestyle or routine adjustments.2,4
“Having muscular weakness means that, on the worst days, holding up a hairdryer simply isn’t possible.”
—Real person living with gMG2
Previous
NextContinue the conversation about gMG symptoms
It’s important to continue the open and honest conversations you already have with your patients about gMG symptoms and their impact on daily living.2,4
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?5,6
The Patient Acceptable Symptom State (PASS) evaluation is a single-question score that has been validated in several chronic inflammatory diseases.5,6
References: 1. 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. 2. 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 3. Pesa J, Choudhry Z, de Courcy J, et al. The impact of myasthenia gravis severity on work and daily activities. Muscle Nerve. 2024;69(4):428-439. doi:10.1002/mus.28063 4. 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. 5. 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 6. 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