MG Awareness Month Helps to Inform Those Looking for Answers
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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