P.S. My little niece (she's 6) thinks that MG is "cool"! She tells all of her classmates that her auntie has "myashtenia gravis" and then proceeds to ask my sis if I'm @ another dr's appt and then tells all of her friends that I'm on "a lot of meds" but am getting better.........Isn't it weird what little kids perceive @ "cool"? She also wants me to have lunch with her this week @ school and meet all of her friends...............
........I was worried that she'd be embarrassed by my "moon face", but apparently I'm cool! I just love little ones! She comes over and we have dance competitions - she just brings such joy to my life! I love having her over!
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Originally Posted by Scots Kat
Hi Erin,
I think your idea sounds great. Over here in Scotland there is a fairly active MG association and they have loads of information pamphlets, posters and clothes availble. I bought a hoody a couple of years ago but sadly with my weight gain it no longer fits!  You might be able to get some ideas ect from their website - let me know if I can be of help (I know sometimes international shipping etc can be a pain).
I've always found people to be generally interested in MG - because I look so healthy and managed to live a fairly active life they are always surprised to find out I'm actually heavily medicated and need to constantly self-monitor! I got some pamphlets about MG from the MGA here and showed them to the people I work with and they were all full of questions etc. The pamphlets are well written too - a sort of "everymans" information pack (they speak about MG as a "rag-doll disorder). The MGA also do a bunch of fundraisers and even send people with MG into schools to speak to kids about what it's like. I think any type of information is good and everyone should be educated to the best of their ability. Maybe some won't care (of course) but who knows - you might help one person who has all the right symptoms and didn't know what was going on!
What ever you decide to do keep us posted! |