Online resource announced in recognition of Rare Disease Day aims to offer support for patients, caregivers, and families in the Myasthenia Gravis community
Titusville, N.J., February 28, 2022 – In honor of Rare Disease Day on February 28 and the 25-30 million Americans living with rare diseases,1 the Janssen Pharmaceutical Companies of Johnson & Johnson today announced the launch of the refreshed iMaGineMyMG, a national campaign aimed to increase awareness of myasthenia gravis (MG), a chronic autoimmune neuromuscular disorder, and provide support to people living with the condition. As part of the campaign, people impacted by MG will also have access to iMaGineMyMG.com, a newly redesigned online resource intended to help guide individuals throughout their journey with the rare disease.
In the U.S. alone, MG impacts approximately 36,000 to 60,000 people.2,3 This rare disease affects the muscles associated with breathing, muscle movements, and eye movements, causing drooping eyelids, double vision, muscle weakness, extreme fatigue, and difficulty speaking, breathing, or swallowing. These symptoms can be mistaken for other conditions, so patients often face months or years of untreated symptoms before they receive a diagnosis. Furthermore, approximately 15 to 20 percent of people with MG may be hospitalized due to severe complications of the disease.4
"Living with MG can be challenging, and at times, isolating," said Meridith O'Connor, a writer, speaker, and patient advocacy consultant living with MG. "I was only 13 years old when I received my MG diagnosis and did not know anyone else living with the condition. On occasion, I felt lonely and found it difficult to relate to my peers. Today, those like me living with this rare disease now have access to resources like iMaGineMyMG.com, a place to connect, share our stories, and feel understood by others on the same journey."
From doctor visit guides to research opportunities, iMaGineMyMG.com offers access to helpful resources for navigating life with MG. Visitors can also virtually connect with the MG community by sharing their own stories and experience through polls, testimonials, and other community activities.
“Due to the complexity of this rare disease, the journey to an accurate diagnosis for MG can be long and frustrating,” says Dr. Raghav Govindarajan, M.D., Neurologist at HSHS Medical Group and Vice Chair of the Neuromuscular Section for the American Academy of Neurology. “It’s time to build awareness, understanding, and community around this devastating disease, and the launch of the newly redesigned iMaGineMyMG.com is an important step toward doing just that. The site provides useful resources, along with tools for navigating diagnosis, treatment options, and ongoing life with this rare disease.”
At iMaGineMyMG.com, patients and caregivers can participate in interactive polls, share stories, and view additional resources. Stay tuned for more community engagement in the coming months with the launch of the refreshed iMaGineMyMG Facebook, Instagram, and Twitter pages.
iMaGineMyMG is an unbranded campaign, sponsored by the Janssen Pharmaceutical Companies of Johnson & Johnson, dedicated to increasing awareness about MG, offering community support, and making space for new research and treatment opportunities to come. iMaGineMyMG seeks to empower patients, patient advocates, and key opinion leaders to use their voices to elevate awareness of MG and offer support to patients, caregivers, and their families.
About Myasthenia Gravis
Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disease that affects skeletal muscles responsible for eye movements, breathing, and body motion, causing drooping eyelids, double vision, muscle weakness, fatigue, and difficulty speaking, breathing, or swallowing. The disease impacts an estimated 700,000 people worldwide and approximately 36,000 to 60,000 patients in the U.S., with approximately 85% of patients diagnosed with the more extensive form of this disease, generalized myasthenia gravis (gMG).2,3 In MG, the immune system mistakenly attacks muscle receptors by producing anti-receptor antibodies (most commonly anti-acetylcholine receptor [AChR] or anti-muscle-specific kinase [MuSK] antibodies) that can block or destroy these muscle receptors, preventing signals from transferring from nerves to muscles.
About the Janssen Pharmaceutical Companies of Johnson & Johnson
At Janssen, we're creating a future where disease is a thing of the past. We're the Pharmaceutical Companies of Johnson & Johnson, working tirelessly to make that future a reality for patients everywhere by fighting sickness with science, improving access with ingenuity, and healing hopelessness with heart. We focus on areas of medicine where we can make the biggest difference: Cardiovascular & Metabolism, Immunology, Infectious Diseases & Vaccines, Neuroscience, Oncology, and Pulmonary Hypertension.
Cautions Concerning Forward-looking Statements
This press release contains “forward-looking statements” as defined in the Private Securities Litigation Reform Act of 1995 regarding Myasthenia Gravis. The reader is cautioned not to rely on these forward-looking statements. These statements are based on current expectations of future events. If underlying assumptions prove inaccurate or known or unknown risks or uncertainties materialize, actual results could vary materially from the expectations and projections of Janssen Research & Development, LLC, any of the other Janssen Pharmaceutical Companies, and/or Johnson & Johnson. Risks and uncertainties include, but are not limited to: challenges and uncertainties inherent in product research and development, including the uncertainty of clinical success and of obtaining regulatory approvals; uncertainty of commercial success; competition, including technological advances, new products and patents attained by competitors; challenges to patents; changes in behavior and spending patterns of purchasers of health care products and services; changes to applicable laws and regulations, including global health care reforms; and trends toward health care cost containment. A further list and descriptions of these risks, uncertainties and other factors can be found in Johnson & Johnson’s Annual Report on Form 10-K for the fiscal year ended January 2, 2022, including in the sections captioned “Cautionary Note Regarding Forward-Looking Statements” and “Item 1A. Risk Factors,” and in Johnson & Johnson’s subsequent Quarterly Reports on Form 10-Q and other filings with the Securities and Exchange Commission. Copies of these filings are available online at www.sec.gov, www.jnj.com or on request from Johnson & Johnson. None of Janssen Research & Development, LLC, the Janssen Pharmaceutical Companies nor Johnson & Johnson undertakes to update any forward-looking statement as a result of new information or future events or developments.
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U.S. Department of Health and Human Services. (2021, January 26). Faqs about rare diseases. Genetic and Rare Diseases Information Center. Retrieved November 22, 2021, from https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases.
Howard J F (2015, June). Clinical overview of MG. Myasthenia Gravis Foundation of America. Retrieved November 22, 2021, from https://myasthenia.org/Professionals/Clinical-Overview-of-MG.
Chen J, Tian D-C, et al. Incidence, mortality, and economic burden of myasthenia gravis in China: A nationwide population-based study. The Lancet Regional Health - Western Pacific, 5, 100063. 2020. Available at: https://doi.org/10.1016/j.lanwpc.2020.100063.
U.S. Department of Health and Human Services. (2021, November 15). Myasthenia gravis fact sheet. National Institute of Neurological Disorders and Stroke. Retrieved February 14, 2022, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Myasthenia-Gravis-Fact-Sheet