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Unique patient-led study into life with myasthenia gravis published in Neurology and Therapy

Picture of author Kenza Seddik
Posted by
Kenza Seddik, Patient Value Neurology & Europe/International Solutions

Myasthenia gravis (MG) is a chronic neuromuscular condition, with an annual incidence of 8 – 10 cases for every 1 million, which can occur at any age and in any race. ,  As a rare, yet severe disease, working directly with the patient community to better understand their lived experience is so important, to help us identify unmet needs and any gaps in access to care.

Recently, a patient-led and co-authored study into the real-life experience of MG was published in Neurology and Therapy, bringing to life the true impact of the disease on patients’ everyday lives. Contributing to this unique analysis has been insightful in so many ways, and collaborating with people living with MG was a valuable opportunity to understand first-hand the challenges they experience.

This collaboration was led by a Patient Council; nine patient advocates across Europe and the United States, all living with MG. Strong partnerships like these between patient advocates and UCB are one step forward in our mission to support innovation in MG and help facilitate more open dialogue between patients and doctors.

Throughout the writing of this report, five key themes were uncovered that help shine a light on the reality of living with MG and emphasise what it means to live with a disease with such varying, fluctuating symptoms, that are not widely understood. We learned from patients the difficulty of adapting their everyday life to manage their symptoms, the challenges of communicating their experience to their physicians, and the emotional toll this takes.

You can read the full patient-led report in Neurology and Therapy and find out more about these key themes here.

We’re proud that this analysis can sit alongside the growing body of valuable literature in this space. Through listening to patients and learning from their insights, we hope to elevate the patient voice, gain a deeper understanding of their experience, and ultimately work together to fulfil unmet needs.

The development of ‘The Lived Experience of Myasthenia Gravis: A Patient-led Analysis’ manuscript was led by two patient advocates in MG: Nancy Law from Colorado, USA and Kelly Davio from London, UK. The study has been published posthumously following Nancy’s death in September 2021 and her invaluable contribution to this paper and leadership of the MG patient advocacy community is hugely appreciated by all involved.

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