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Hungarian MG Patients Use Social Media to Connect Across the Miles

Hungarian MG Patients Use Social Media to Connect Across the Miles

By Kate Stober

Hungary is a country of about 10 million people, and there are only 2,000 people diagnosed with myasthenia gravis. If you’re diagnosed with MG in Hungary, there’s a slim chance you’ll never run into another MG patient.

 

But thanks to the magic of social media, connecting with others is just a click away.

 

Hungarians living with MG have gravitated to a Facebook group called Myasthenia Gravis Positive Vibes started by Zoltan Lelkes, an MG patient who has been living with the disorder for about 30 years. Zoltan is an example for other patients to follow because, with lifestyle changes, he’s been symptom free for a long time - even running a marathon. The support group serves as a place for patients to share symptoms, treatments and how the disease has affected them and their families. Those who are feeling strong check in on - and give hope to - those who are not. They share photos of the places where they live and travel, and they talk about other common interests, like children and work.

 

The group has become a lifeline for Andrea Ujj, who was diagnosed with MG in June of 2019.

 

She found out she had myasthenia after collapsing at work one day. The emergency responders who treated her thought it was stress-related — it was the end of the fiscal year, and Andrea shouldered a lot of responsibility as the CFO of a multinational company. But after symptoms persisted, she was admitted to the hospital, where neurological and other tests confirmed she had MG.

 

“I was shocked,” she shared. “I was shocked because I didn’t think when I collapsed it was something serious. My thinking was that it could just be burnout. I will never forget the doctor’s words: ‘It is a rare, incurable disease, but with treatments can be maintained quite well. We can have better quality of life now.’”

 

After the diagnosis, which was a very difficult time, Andrea joined the Facebook group and got to know Zoltan and many others. She found the discussion extremely helpful as she sought to understand her MG diagnosis.

 

As part of the learning journey, she also discovered MGFA, and attended several webinars and the virtual conference. She would translate the sessions, sharing valuable information with the Hungarian MG patient Facebook group. She learned that the annual MGFA Walk, which raises awareness and funds for MGFA’s mission, was being held October 10, 2020.

 

“I would like to be part of this event, but I couldn’t figure out how to do that because I couldn’t travel to America. I had the idea that we could connect virtually,” Andrea said.

 

She raised the idea with the Facebook group, and received an enthusiastic response. Because it was 2020, and pandemic restrictions were in place, members of the group would walk at the same time, but on their own.

 

Because of the pandemic, they couldn’t make matching t-shirts, but everyone did their own version of official MG walk apparel… from homemade buttons and badges to hand-illustrated t-shirts. Andrea reached out to former colleagues at the printing company where she worked years ago, and within a day they had printed a patch for her, which she sewed on to her shirt.

 

She travelled with her husband and son to Lake Balaton, a beautiful lake ringed by volcanic mountains. The "Hungarian Sea" is the people's name for this 50-mile-long lake with silky, green-yellow water in the middle of Transdanubia. There are picturesque vineyards in the region. Andrea and her family walked 10 kilometers.

 

Others in the group walked in their own locations, whether in a park, on a trail, or just in their neighborhoods. Walkers included Istvan Gergely, Bettina Szalai, Zoltan Lelkes, Erika Kiss, Maria Szabo, Krisztina Kohalmy, Csilla Burkus. Vivien Rezes, a Hungarian expat, joined from Hawaii. They were joined by spouses, children, and dogs.

 

“Everyone shared photos in the group,” Andrea said. “There are a lot of people who can’t do a walk because they are in bad conditions, but they were happy to see others do the walk. It gave them hope for their own improvement.”

 

Group members shared that being part of a collective experience was important and meaningful. Seventy-year-old Istvan Gergely walked with his wife in a park near their apartment.

 

“It was an amazing feeling to belong somewhere.”

 

Many others shared that walking is a daily ritual, an important part of their care regime.

 

“I’ve been walking for years,” said Bettina Szalai. “Every patient has to do some kind of movement.”

 

Zoltan Lelkes agreed.

 

“Walking makes me feel better. With lifestyle changes, and movement, we can support our bodies. We can have better life conditions as well.”

 

Andrea, Zoltan, and the other members of the group hope they can do another walk in 2021, but in person, together. They also plan to get together for a summit, where they can talk to each other about their illness and connect personally.

 

For Andrea, the impulse to organize the MG walk in Hungary came from the heart. She was called to be part of a community, to do something to raise awareness for this extremely rare disease.

 

“My advice would be, if you are not an MG patient but you have the chance to support people with MG, do it - it’s great. Please be resilient and help others to live with MG easier. MG patients should not be alone to fight against this hard illness. For others, who are living with MG, please never give up. Hope always! Sometimes down, sometimes up, be hard in soul and never give up our common dream to achieve the long-awaited remission time.”

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