A new article has been published in Neurology and Therapy which specifically discusses the lived experiences of patients with myasthenia gravis (MG). The most notable thing about this article is that it was patient-led.

The article discusses what it’s really like to live with the condition, demonstrating to the healthcare professionals what it is that it is most needed. By understanding what the gaps are in care, from patients themselves, physicians and researchers can better comprehend what their patients are missing.

This article was made possible by UCB, a pharmaceutical company. The development of the paper was led by Nancy Lawfrom and Kelly Davio, who are both patient advocates. Sadly, Nancy passed away this September. Her contributions were invaluable, not simply to this paper, but to the MG patient community as a whole.

Myasthenia Gravis

Myasthenia Gravis (MG) is a rare autoimmune disease where autoantibodies harm proteins in the neuro-muscular junction. It ultimately impacts the communication between the nerves and the muscles.

Patients may experience double vision, drooped eyelids, difficulty breathing, serious muscular weakness including weakness of the respiratory system, and overall fatigue.

The symptoms come and go, and can fluctuate in severity. They can significantly impact patients’ quality of life. In this report, patients discussed how it impacted their family life, their work life, and even their basic functioning – breathing, eating, and talking. It requires constant adaptation. 

The condition impacts all genders, ages, and races.

The Article

This article was led by a group called the Patient Council. This council includes 9 individuals in both the United States and Europe.

Through discussions with MG patients, this study aimed to uncover the psychological, physical, and social experiences of patients. It ultimately identified that more open conversations are needed between patients and their providers. It’s not just about what’s on paper regarding the disease- it’s about how it impacts patients on a day-to-day basis and how they can be better supported.

The study ultimately found 5 themes that patients experience.

1. Symptoms are unpredictable. Sometimes, they feel great. Sometimes, they feel awful. Planning is incredibly difficult, and they can feel vulnerable, not knowing when they’ll feel poorly again.
2. Patients constantly have to adapt in every aspect of their life. They must be flexible with their work, treatment plan, family, family planning, and more.
3. Treatment inertia is common. This can lead to the patient receiving the same care over time, even if their needs change.
4. Patients often don’t feel connected to their doctor because there is a lack of communication or ineffective communication.
5. MG affects patients emotionally. They can feel socially isolated, as if they don’t have control of their lives, frustration, anxiety, loneliness, anger, and more.

The ultimate goal is that through sharing this study, patient and provider relations will improve because providers can learn exactly what it is their patients need. Providers will be able to provide care which is more well-informed. The patients interests and needs will be first.

You can read more about this article here.