Health Literacy Month Is a Reminder That Knowledge Is Power

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by Michelle Gonzaba |

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Strength in Weakness column by Michelle Gonzaba / grief

It took almost a year to be diagnosed with myasthenia gravis (MG), after months of suffering from weird symptoms and speaking to numerous medical professionals.

It was such a disorienting experience for me, but I felt complete relief at finally being able to put a name to the thing that was causing my body to become so weak. Even so, I didn’t understand then that I was only at the beginning of my journey toward understanding MG. It wasn’t long before I was overwhelmed by the amount of MG information at my fingertips.

Every October is Health Literacy Month. This month-long observance pools the resources of numerous organizations in order to empower patients so they have the information they need to make smart decisions about their health and to improve their health outcomes.

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Caught in the web of the internet

I had to wait for an appointment with a neurologist after I received my diagnosis, and my primary care physician didn’t know much about MG. So, I turned to the internet for information.

I found so many websites, blogs, and articles, and reading about things like intravenous immunoglobulin, thymectomies, and CellCept (mycophenolate mofetil) made me more confused than ever. I decided I was better off waiting to speak with a neurologist.

But I was left even more uncertain after my first visit with a neurologist. I knew the doctor was doing everything correctly, but I still didn’t understand all of the treatment options that were presented to me. The medical jargon confused me beyond belief. How was I supposed to make the best decisions for myself if I didn’t understand what my doctor was saying? My health literacy was at an all-time low.

My note-taker mom saved the day

Luckily, I didn’t meet with the neurologist by myself. My mother was also there, taking notes while the neurologist explained everything. When we got home, we discussed what the doctor had told us, and we figured out what questions to ask at the next neurology visit. Without my mom there, I don’t know how I would’ve ever understood what was going on.

Everyone will have to make important medical decisions for themselves and for loved ones at some point in their lives. To make smart decisions, it is important to ask questions and reach out to medical professionals when something needs to be explained. Understanding our health issues can lead to better outcomes, which is what everyone wants.

So, this October, I will be taking the time to look at new MG news, discuss my health with my care team, and develop my health literacy.

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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

Janet Sangren avatar

Janet Sangren

I totally understand. I was diagnosed in 1989 after 2 years of doctors not knowing what was wrong with me. I was told it was all in my head....and panic attacks. I researched online and made an appointment with the head doctor for MG in Southern California Dr Keesey. I was hospitalized 3 weeks locally and then a week at Cedar Sinai and had a transcervical thymectomy because I was too weak for the normal surgery. It's been a long journey that I'm still living every day. My MG affects my entire body and breathing. My advice is never give up and never stop searching for answers. Family and prayer help you get through the challenges.

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2021 Myasthenia Gravis Survey Results

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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.