So I thought as it’s International Women’s Day, I should write something related today. The only trouble is I didn’t want it to feel forced. I have many inspiring women (and men) in my life but there wasn’t an obvious link to the MG other than the love and support they’ve provided. So what did I do? What anyone would – I googled ‘inspirational women with myasthenia gravis’. I’m delighted I did, as it led me to Women With MG.
For those of you that haven’t heard of Women with MG, it’s an international online support group. From what I can see, there seem to be two main sources of activity – the online support group(s) on Facebook and the blog.
I have submitted an application to join the group and I hope I pass the test. It will be interesting to see how it differs from the Myaware young generation group, which I find incredibly useful. Although I haven’t had any issues posting there and find the men in the group very supportive and thoughtful, I wonder if women will feel more comfortable posting personal questions and struggles on there.
There also seems to be a family support group for parents of children with MG. It would be interesting to hear if any of you are currently members of that group.
I’ve had a quick scan through all the blog posts and I would say for people with myasthenia it’s definitely worth doing the same.
The group has focused on quality not quantity (unlike me). Each post is well crafted, informative and engaging. I learned from reading it that the song Her Diamonds by Rob Thomas was written about his wife having an autoimmune condition. I read some very courageous personal stories which members had shared. But the entry about the group’ step year anniversary was the one that moved me most. It persuades readers about the importance of raising awareness about myasthenia gravis by discussing the members who have died, and those in the wider MG community, in the two years since the group started. It stresses that those who say MG is no longer a life threatening disease are wrong and that the only thing stopping it from being so is good medical care from professionals who really understand the condition. Unfortunately, there are many less informed medical professionals and until this is no longer the case, MG continues to be a death sentence for some.
Raising awareness is the key message here and once again I was glad that I had started this blog. If you, dear reader, know any medical professionals please share the word about myasthenia gravis as it could save lives.
For now, I wish you a happy international women’s day and I look forward to being able to tell you more about the group as I get more involved.