For those of you with Myasthenia Gravis, I hope you’re taking advantage of all the fine resources the Myasthenia Gravis Foundation of America (MGFA) has for you on their website: https://myasthenia.org. For those who are caregivers, family or friends of someone with MG, I strongly encourage you to check out this website, as well. It’s truly a place for people to Connect, Learn and Support.
The site provides some amazing information on Understanding MG and Living With MG, as well as information on treatments and research. The information provided is current and frequently updated to include any new research findings.
For those who like to get involved, there is information about MGFA events and webinars, as well as ways you can support the MG community.
When I was first diagnosed with MG, I was provided a brochure about MGFA by my doctor. I opened the website and found a section called “After Your Diagnosis” under the Living With MG heading. There I learned how to talk about Myasthenia Gravis with co-workers, family, friends, and even children. It’s tough enough deciding “if” you should tell people; knowing what to tell them is even more difficult. Surely you don’t want to sound like a hypochondriac or bore people with details, but how do you share information they may need to know about your MG without sounding like a freak? This section will help you through that.
Especially helpful for me was the section on “Explaining Myasthenia Gravis to Kids”. I have two grandchildren. One is five and the other is two. Do I tell them? Are they too young to understand? The five year old may understand a little, but the two year old won’t. For younger children, it’s enough to say that you have a condition that sometimes makes you feel weak and tired. That means ol’ Pappy may not be able to run and play like I used to and that I may have a little trouble reading books out loud, but I still love them to the moon and back.
My five year old grandson calls it “OMG”. I have to giggle a little whenever I hear him say that because you know his parents are just cringing inside knowing he’s picked up another popular phrase they’d probably wished he hadn’t. You have to love what comes out of the mouth of children.
Some of you may remember me talking about how June was Myasthenia Gravis Awareness Month. Many of the things my family did to support me came from ideas found on the MGFA website. My daughter found some teal bracelets (teal is the official color of MG) on Amazon and started a whole campaign with them. On my website, you can view many of the pictures of my family and friends donning their bracelets. Those pictures still bring tears to my eyes when I see how many people are actually supporting me through this battle.
During the month of June, I also ran a fundraiser to raise money for MG research, patient support services and education. I raised over $500, which may not seem like a lot, but it meant a lot to me to have family and friends donate so generously. All money went directly to MGFA.
So, whether you have Myasthenia Gravis, are “Suspect for Myasthenia Gravis”, or a caregiver, family member or friend of someone with MG, you’ll find lots of great information on the MGFA website.
Thanks, MGFA, for all you do to help us in our battle with MG. And, thank you to you, the readers of my blogs. It means a great deal to me that you are reading them. I can’t guarantee each blog will be creative, well-written or enjoyable, but I can guarantee each blog will come from my heart.
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