On October 27, 2021, PR Newswire highlighted an article about a unique patient-led analysis that was conducted in Atlanta, Georgia, and Brussels, Belgium by people living with myasthenia gravis (MG). The study was published recently in the journal Neurology and Therapy.
Nine members of the Patient Council who serve as MG advocates in the U.S. and across Europe also participated. They were joined in their effort by UCB, a global biopharmaceutical company.
This unique endeavor explored the impact of MG on patients and assessed current issues in patient care. The research participants were from Brussels, Belgium, and Atlanta, Georgia. Two of the Patient Council members served as co-authors.
About MG
Eight to ten cases are diagnosed each year per one million people. It does not favor males or females or any specific race or age.
MG is a neuro-muscular condition whereby the immune system mistakenly attacks areas connecting muscles and nerves. This causes unpredictable symptoms such as muscle weakness, difficulty breathing, and swallowing.
The NIH defines MG as an auto-immune condition in which auto-antibodies attack specific proteins at the neuromuscular junction.
The Patient Analysis Resulted in Several Major Themes
- Patients described feeling vulnerable due to the unpredictable nature of MG.
- Patients describe the tradeoffs they must accept in their work, treatment, and family planning due to MG’s unpredictability.
- Patients have reported communication barriers and conflicting views on their treatment and treatment goals.
- And finally, patients commented on the emotional toll and various feelings of frustration, guilt, anger, anxiety, and depression.
- Other concerns were loss of support, social connections, and control.
The MG manuscript, which contained patient input and extensive literature search, was co-authored by Nancy Law, Colorado USA, and Kelly Davio who lives in London, UK. Nancy was a prominent leader of the MG advocacy community. Nancy passed away in September 2021.
UCB Patient Kenza Seddik, Co-author
Kenza, also a co-author of the study, added that through their analysis the authors hope to give a voice to MG patients. The report offers an unprecedented amount of first-hand information to healthcare providers. It also identifies the need for better dialogue between clinicians and their patients.
Kenza mentioned that although MG is rare, reported cases are increasing due to advanced technology and increased awareness.
UBC biopharmaceuticals, serving over 7,600 people in forty countries, is dedicated to the development of medicines that treat diseases of the central nervous system and of the immune system.
