Top of this page
Skip navigation, go straight to the content

This section is intended for media and financial analysts
Newsroom Press Releases

Unique patient-led and co-authored analysis of the experience of living with myasthenia gravis published in Neurology and Therapy

· New analysis led by patients from across Europe and the United States provides first-hand insight into the lived experience of myasthenia gravis
· The analysis highlights five key themes that are central to the patient experience
· Patient advocates behind the paper call for greater understanding of myasthenia gravis and more open dialogue between patients and doctors

Brussels, Belgium and Atlanta, Ga. – 27 October 2021 07:00  A new, patient-led research analysis published this week in the journal Neurology and Therapy reveals the lived experience of myasthenia gravis (MG) and calls for greater understanding of the reality of living with MG, through the eyes of the patient.

In a collaboration between people living with MG and UCB, a global biopharmaceutical company, ‘The Lived Experience of Myasthenia Gravis: A Patient-led Analysis’ is a unique, patient study to explore and assess the real-life impact of MG and current gaps in care. The qualitative research explored the significant physical, psychological, social and day-to-day experience of living with the rare autoimmune condition and identifies a need for improved dialogue between patients and clinicians. The study was led by the Patient Council – nine individuals living with MG who serve as patient advocates across Europe and the United States – and co-authored by two Patient Council members.

This patient analysis is a significant step forward in articulating what it means to live with myasthenia gravis,” said joint lead author Kelly Davio, MG patient expert, London, UK. “Listening to individuals and exploring what their insights mean for patient care is an essential project, and our findings will help fill a number of knowledge gaps. Our research has clearly highlighted an urgent need for improved physician patient communication and greater, more nuanced understanding of MG – not only the physical symptoms, but how the disease impacts patients’ lives.

MG has annual incidence of 8 – 10 cases for every 1 million and can occur at any age and in any race.[1],[2] As a chronic neuro-muscular condition where the body’s immune system mistakenly targets the connections between nerves and muscles, patients can experience unpredictable, fluctuating symptoms such as fatigue, muscle weakness and difficulty breathing and swallowing.[3]-5[4][5]4444

Five key themes on the reality of living with MG[6]

Analysis of the qualitative patient research uncovered five key themes that are central to the patient experience:

  1. The lives of people with MG are dominated by unpredictable, fluctuating symptoms, with periods of worsening and remission, causing uncertainty that makes planning challenging and creates feelings of vulnerability, which patients describe as being worse than the physical symptoms themselves
  2. Consequently, people with MG constantly have to adapt and accept trade-offs as part of their everyday life – including in the critical areas of work, family planning and treatment
  3. Patients perceive a ‘treatment inertia’ in both themselves and their clinicians, which results in them not always receiving the level of care they need
  4. People with MG can feel disconnected from their physicians due to communication barriers and conflicting perspectives on the disease, treatment burden and treatment goals
  5. MG takes an emotional toll on patients, with many experiencing feelings of anxiety, frustration, guilt, anger, loneliness and depression, driven by the burden of disease, social isolation, loss of control and lack of support

‘Matthieu’, a patient living with MG said: “People don’t really understand the everyday experience of myasthenia gravis. It can have a negative impact on almost all aspects of your work and family life, including basic functions of moving, eating, talking, and breathing. I hope this report will help drive a greater understanding amongst physicians and the general public, on the reality of living with this condition – not just in terms of physical symptoms, but also in how we have to constantly adapt our lives just to manage and the emotional impact this has.”

Kenza Seddik, UCB Patient Experience Lead & co-author added: “While myasthenia gravis is rare, reported incidence rates are increasing, which is thought to be due to improved diagnostic techniques and an increased awareness of the disease. There is a growing wealth of published literature on myasthenia gravis, but few studies have explored the nuances of the patient experience. Through this analysis, we aim to give patients a voice so that we could gain a deeper understanding of the multifaceted lived experience of this condition. We hope that by sharing the findings from this study, we can help facilitate better-informed patient care and trigger more interest in listening to what patients say and putting their interests first.”

The development of ‘The Lived Experience of Myasthenia Gravis: A Patient-led Analysis’ manuscript was led by two patient advocates MG, Nancy Law from Colorado, USA and Kelly Davio from London, UK. The report is the result of detailed patient input and an exhaustive literature search, offering an unprecedented level of first-hand information for healthcare providers into the challenges facing people living with the condition. 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.  

About myasthenia gravis

MG is an unpredictable, chronic auto-immune condition in which auto-antibodies attack specific proteins at the neuro-muscular junction. This disrupts the way that nerves can communicate with muscles, resulting in muscle weakness and fatigue. Both men and women are impacted equally, and it can occur at any age and in any race. Myasthenia Gravis is a rare disease with an annual incidence of 8 – 10 cases for every 1 million1. Those living with MG can experience a variety of symptoms, including drooping eyelids and double vision as well as severe muscle weakness that can result in life threatening weakness of muscles of respiration. 

About UCB in Rare Diseases

At UCB, we don’t just see patients or population sizes, we see people in need. Through decades of serving the neurology and immunology communities, we have improved lives with impactful medicines and by enhancing the social and emotional well-being of patients. As a continuation of our heritage, we are now expanding our efforts to tackle rare neurological and immunological diseases where current options offer little hope.

About UCB
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 7 600 people in approximately 40 countries, UCB generated revenue of € 5.3 billion in 2020. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Twitter: @UCB_news

Forward looking statements UCB
This press release may contain forward-looking statements including, without limitation, statements containing the words “believes”, “anticipates”, “expects”, “intends”, “plans”, “seeks”, “estimates”, “may”, “will”, “continue” and similar expressions. These forward-looking statements are based on current plans, estimates and beliefs of management. All statements, other than statements of historical facts, are statements that could be deemed forward-looking statements, including estimates of revenues, operating margins, capital expenditures, cash, other financial information, expected legal, arbitration, political, regulatory or clinical results or practices and other such estimates and results. By their nature, such forward-looking statements are not guarantees of future performance and are subject to known and unknown risks, uncertainties and assumptions which might cause the actual results, financial condition, performance or achievements of UCB, or industry results, to differ materially from those that may be expressed or implied by such forward-looking statements contained in this press release. Important factors that could result in such differences include: the global spread and impact of COVID-19, changes in general economic, business and competitive conditions, the inability to obtain necessary regulatory approvals or to obtain them on acceptable terms or within expected timing, costs associated with research and development, changes in the prospects for products in the pipeline or under development by UCB, effects of future judicial decisions or governmental investigations, safety, quality, data integrity or manufacturing issues; potential or actual data security and data privacy breaches, or disruptions of our information technology systems, product liability claims, challenges to patent protection for products or product candidates, competition from other products including biosimilars, changes in laws or regulations, exchange rate fluctuations, changes or uncertainties in tax laws or the administration of such laws, and hiring and retention of its employees. There is no guarantee that new product candidates will be discovered or identified in the pipeline, will progress to product approval or that new indications for existing products will be developed and approved. Movement from concept to commercial product is uncertain; preclinical results do not guarantee safety and efficacy of product candidates in humans. So far, the complexity of the human body cannot be reproduced in computer models, cell culture systems or animal models. The length of the timing to complete clinical trials and to get regulatory approval for product marketing has varied in the past and UCB expects similar unpredictability going forward. Products or potential products which are the subject of partnerships, joint ventures or licensing collaborations may be subject to differences disputes between the partners or may prove to be not as safe, effective or commercially successful as UCB may have believed at the start of such partnership. UCB’ efforts to acquire other products or companies and to integrate the operations of such acquired companies may not be as successful as UCB may have believed at the moment of acquisition. Also, UCB or others could discover safety, side effects or manufacturing problems with its products and/or devices after they are marketed. The discovery of significant problems with a product similar to one of UCB’s products that implicate an entire class of products may have a material adverse effect on sales of the entire class of affected products. Moreover, sales may be impacted by international and domestic trends toward managed care and health care cost containment, including pricing pressure, political and public scrutiny, customer and prescriber patterns or practices, and the reimbursement policies imposed by third-party payers as well as legislation affecting biopharmaceutical pricing and reimbursement activities and outcomes. Finally, a breakdown, cyberattack or information security breach could compromise the confidentiality, integrity and availability of UCB’s data and systems.

Given these uncertainties, you should not place undue reliance on any of such forward-looking statements. There can be no guarantee that the investigational or approved products described in this press release will be submitted or approved for sale or for any additional indications or labelling in any market, or at any particular time, nor can there be any guarantee that such products will be or will continue to be commercially successful in the future.

UCB is providing this information, including forward-looking statements, only as of the date of this press release and it does not reflect any potential impact from the evolving COVID-19 pandemic, unless indicated otherwise. UCB is following the worldwide developments diligently to assess the financial significance of this pandemic to UCB. UCB expressly disclaims any duty to update any information contained in this press release, either to confirm the actual results or to report or reflect any change in its forward-looking statements with regard thereto or any change in events, conditions or circumstances on which any such statement is based, unless such statement is required pursuant to applicable laws and regulations.

Additionally, information contained in this document shall not constitute an offer to sell or the solicitation of an offer to buy any securities, nor shall there be any offer, solicitation or sale of securities in any jurisdiction in which such offer, solicitation or sale would be unlawful prior to the registration or qualification under the securities laws of such jurisdiction.

For further information, contact UCB:

Brand Communications
Jim Baxter
Neurology Communications, UCB
T+32.2.473.78.85.01 jim.baxter@ucb.com

Corporate Communications
Laurent Schots
Media Relations, UCB 
T+32.2.559.92.64 laurent.schots@ucb.com

Investor Relations
Antje Witte        
Investor Relations, UCB
T +32.2.559.94.14 antje.witte@ucb.com

[1] Gilhus N et al. Myasthenia Gravis. N Engl J Med. (2016)29;375(26):2570-2581. Doi: 10.1056/NEJMra1602678

[2] Carr, A.S., Cardwell, C.R., McCarron, P.O. et al. A systematic review of population based epidemiological studies in Myasthenia Gravis. BMC Neurol. 10, 46. (2010) 18;10;46. Doi: 10.1186/1471-2377-10-46.

[3] National Institute of Neurological Disorders and Stroke. Myasthenia gravis fact sheet. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Myasthenia-Gravis-Fact-Sheet (Last accessed: September 2021).

[4] Myasthenia Gravis Foundation of America. Myasthenia gravis quick facts. https://myasthenia.org/What-is-MG/MG-Quick-Facts

(Last accessed: September 2021).

[5] Conquer Myasthenia Gravis. What is MG? https://www.myastheniagravis.org/about-mg/what-is-mg/ (Last accessed:

September 2021).

[6] Law, N., Davio, K., Blunck, M. et al. The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis. Neurol Ther (2021). https://doi.org/10.1007/s40120-021-00285-w


Stay up-to-date on the latest news and information from UCB