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Spreading MG Awareness, One Step at a Time By Advocating

Spreading MG Awareness, One Step at a Time By Advocating

By Kate Stober

Drea Carbone began her MG advocacy almost as soon as she was diagnosed. She hasn’t slowed down since.

 

For several years I had been experiencing worsening double vision, but not one doctor ever mentioned it could be something serious. I was given prisms in my glasses and sent on my way.

 

By 2017, I was headed for eye surgery. The first step was a series of blood tests to rule out any potential causes, like Graves Disease or Myasthenia Gravis. “But don’t worry,” the strabismus specialist said dismissively, “you don’t have any of them.”

 

Then the lab tests came back. I had Myasthenia Gravis. I headed home from the doctor’s office and started Googling.

 

The more I read about MG, the more I could relate.

  • Weakness? Yes
  • Fatigue? Yes
  • Trouble swallowing? Yes
  • Memory issues? Yes
  • Biiig? Yes

 

All the issues I’d been dealing with for years suddenly made sense.

 

It would be six months before I could see a neurologist to treat my MG. In the meantime, I found the MGFA website and the MG Walk. Now that’s something I knew what to do with. I’ve been doing volunteer work and fundraising for my entire life.

 

Friends and family joined me on that first walk in Virginia, and it was wonderful in so many ways. It was the first time I met someone else who had MG. After that, my involvement just grew.

 

I had done fundraising before so I knew where to go and how to do it. A friend of mine owns a restaurant, so for three years we’ve done a fundraiser there. A good friend lives in San Francisco, so I flew out to do the walk there. My parents live near Boston, so our team did that walk, and then in Maryland, too.

 

Having my parents and friends involved is huge. I “voluntell” them to do various things, like taking photos at the event. They will share on their social media, and that spreads awareness even more. And it’s eye-opening for them to see everybody else with MG.

 

That first year in Virginia I met folks working for MGFA. I think they were impressed with my attitude and creative fundraising efforts, so they asked me to be “the Virginia MG Walk Hero” in 2018.

 

My mom sewed me a teal cape with a snowflake on the back for the event, to match the tutus we wear. Our costumes help grab attention, and then we can explain to people who notice us that we’re raising awareness for MG.

 

The 2018 walk led to advocacy opportunities. I spoke to the scientists and doctors of a Belgian biopharmaceutical company at their 2019 Rare Disease Day event, and last year joined others at the Capitol for Rare Disease Week. We had seven different meetings with staff from Congressional offices, and I met a ton of people with MG and other rare diseases.

 

How do I make it work? I’m definitely persistent. I’m real. On a personal level, I cope with humor. I think a lot of times when people hear the word “disease,” the first thing they think is the plague! People kind of tense up. When someone hears about your MG, you have to disarm them. Humor just works for me.

 

I would encourage more people to get involved, whether you have MG or know someone who does. Meeting other people with MG helps you. You have this instant support network, and your involvement can help others, too. If you try to go it alone, you are doing a disservice to others and yourself. You could find some joy and some healing and some peace just from being involved, which I don’t think a lot of people think about. They get a diagnosis, and it just stops there.

 

Volunteering is not necessarily work. It’s another healing method. It’s another treatment. Half of what you’re doing is medical — you do need those medicines — but the other half is in your head and what the disease does to you. Having a positive experience, you feel a lot less alone. You’re doing something positive, and when you put that out in the world, it comes back to you. The happier you are, the better off you do.

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