Redesigned Patient Website Launched by Janssen for Its US Campaign

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by Marta Figueiredo, PhD |

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To celebrate Rare Disease Day, on Feb. 28, Janssen has launched a refreshed national campaign, called iMaGineMyMG, to increase awareness about myasthenia gravis (MG), provide support to people living with the disease and their families, and open up opportunities for potential research.

The company has redesigned the campaign’s website which provides resources to help guide patients throughout their journey with MG.

The website also provides access to doctor visit guides and clinical trial opportunities, and allows patients and caregivers to connect virtually with the MG community by sharing their own stories and experiences through testimonials, polls, and other community activities.

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Lack of Symptom Fluctuations in Patients Linked to Delayed Diagnosis

Estimated to affect about 36,000 to 60,000 people in the U.S., MG is a rare autoimmune disease in which the immune system produces self-reactive antibodies that mistakenly attack proteins involved in the communication between nerve and muscle cells.

This leads to muscle weakness, drooping eyelids, speaking, breathing, or swallowing difficulties, and fatigue — symptoms shared with several other neuromuscular conditions that often contribute to delaying a correct diagnosis by months or years.

About 15%–20% of people with MG may be hospitalized due to the disease’s severe complications.

“Due to the complexity of this rare disease, the journey to an accurate diagnosis for MG can be long and frustrating,” Raghav Govindarajan, MD, neurologist at Hospital Sisters Health System Medical Group and vice chair of the neuromuscular section for the American Academy of Neurology, said in a press release.

“It’s time to build awareness, understanding, and community around this devastating disease, and the launch of the newly redesigned is an important step toward doing just that,” as it “provides useful resources, along with tools for navigating diagnosis, treatment options, and ongoing life with this rare disease,” Govindarajan added.

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After the Diagnosis, Is My Life Over?

Meridith O’Connor, a writer, speaker, and patient advocacy consultant with MG, said that living with the disease “can be challenging, and at times, isolating,” remembering her own diagnosis at 13 years of age, when she did not know anyone else living with the condition.

“On occasion, I felt lonely and found it difficult to relate to my peers,” O’Connor said. “Today, those like me living with this rare disease now have access to resources like, a place to connect, share our stories, and feel understood by others on the same journey.”

Responses to the site’s polls, launched monthly, will be used also to gain a better understanding of MG and inform future research conducted by Janssen and its partner, the Myasthenia Gravis Foundation of America.

The campaign will also launch refreshed Facebook, Instagram, and Twitter pages in the coming months, offering other opportunities for community engagement.

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.