MG Awareness Month Helps to Inform Those Looking for Answers

Michelle Gonzaba avatar

by Michelle Gonzaba |

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PTSD, awareness, exercise, travel, community, hiding, Cinco de Mayo, IVIG therapy, COVID-19 vaccine

When I discuss myasthenia gravis with new acquaintances, I usually get shocked faces and confused looks. I don’t blame them — MG isn’t exactly one of the most well-known rare diseases. I would even say it’s the Jan Brady of rare diseases: It’s always been there, but no one really knows or understands anything about it. (My apologies to all the Jan fans out there.)

That’s why it’s so important for diseases like MG to have a specific month dedicated to raising awareness. Every year, the MG community spends the month of June holding events and advocating for themselves and others. Not only is this time of year important for fighting for the rights of those with MG, but it also gives the community the opportunity to teach others about the disease.

As someone who has been reluctant to talk about MG, I have never participated in any awareness events. Terrible, I know. But as I’ve grown older and become more comfortable with myself, I’ve realized I need to be an advocate for myself and others.

While MG is still considered a rare disease, the diagnosis rate has increased over the years. Although there are several reasons for this, awareness of the disease always helps those who have the symptoms but can’t figure out what’s happening inside their body. How can a person know what they have if they’ve never even heard of the disease?

If I had been aware of MG when I began to show signs of weakness, I may have been diagnosed more quickly. With a quicker diagnosis, I might have avoided a myasthenic crisis. The more I’ve thought about it, the more I understand how important it is to raise awareness. I know how much of a positive impact it would have had on me.

With the power of technology and social media, many more can learn about MG and help others who may be suffering in silence from this rare disease.

This year, I’ve decided to try to participate in this month’s events. There are many ways to get involved, and I have my eye on a yoga seminar. But awareness is so much more than events and speeches. Awareness is about knowledge and understanding.

Someone out there may be showing signs of weakness or other symptoms and might not know where to start. Anything from a government proclamation to an article posted on Twitter could lead them to information that might save their life.

MG Awareness Month is a time for reflection, community, and outreach. People with MG should do whatever they feel comfortable doing, whether it’s a yoga session or simply sharing someone’s story. Either way, MG awareness will grow, and it just might reach those who need it most.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Ana tohon avatar

Ana tohon

Diagnosed generalized MG march 2020 in pandemic period. Surgery approved six months later. Never accepted Plasmapheresis just oral treatment. Had thymectomy April 19 2021. I feel grate. I'm taking the minimal MG oral treatment until blood test for antibodies count is done in June. I'll be medications free.Thymectomy is the answer

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Ana, I'm so happy to hear the thymectomy has helped you. I had one in 2012 and it changed my life for the better. Thank you for reading and commenting!

Reply
Asma Zubaida avatar

Asma Zubaida

Hey,
I am a 29 year old girl. I was diagnosed with MG whn I was 15. Was diagnosed early but treatment was late. Suffered crisis 3 times. But still M alive n kicking!!

Reply
Michelle Gonzaba avatar

Michelle Gonzaba

Hi Asma, so happy to hear you are doing well! Thanks for reading and commenting!

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Mario Sylvester avatar

Mario Sylvester

I was diagnosed in 2008 when I was 38 years old have thymectomy in 2009 after that neurothymoma but I am still alive and kicking.

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Michelle Gonzaba avatar

Michelle Gonzaba

So happy to hear that you are doing well Mario. Thank you for reading!

Reply
Katherine E Morrow avatar

Katherine E Morrow

I had no idea what 😦 was happening to me. First I could not sit up on my own. . Went to ER and was flat on my back for a month Had to learn to walk 👣 again. I thought it went away. Dr. never explained it to me. Now I 70 years inexperienced still don't know how to explain to friends.

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Michelle Gonzaba avatar

Michelle Gonzaba

Hi Katherine, thanks for reading! I agree-MG is difficult to explain to friends. I always have trouble describing it to others. I hope you are doing well!

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Jacqueline Marquiz avatar

Jacqueline Marquiz

I was diagnosed 5 years ago, many ocular, and had a thymectomy 3 years ago. I felt great, until last year. I have lost so much muscle mass in my legs and now have numbness/tingling in lower extremities. Hopefully I'll have more answers after my second visit to UCLA Neurology next week... Thanks for your article.. Jacquie

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Michelle Gonzaba avatar

Michelle Gonzaba

Thank you for reading Jacquie. I am sending you good vibes for your appointment!

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Joyce Siegel avatar

Joyce Siegel

I would love to hear stories of those with MG who have had success with Functional Medicine doctors.

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Michelle Gonzaba avatar

Michelle Gonzaba

I would like to hear those stories too Joyce! We have forums where patients can discuss their experiences with MG. If you'd like, click here to visit them. Thanks for reading!

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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.