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Dysautonomia Awareness at Syracuse


Sunfish
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so when my mom mentioned it too me i almost started crying (b/c i was so touched) but she said "pretend you don't know b/c he'll call soon and tell you himself." but anyhoo...

my "little" brother (who is 6'3"...not so little anymore :) ) is a junior at Syracuse University in the school of communications. for an assignment this semester he had to choose a medical topic for a project related to bringing about more awareness via media outlets. amongst other things there has to be a mock press conference, press releases, etc.

so yep...he's doing dysautonomia. how cool is that?

his choosing it means a lot to me on multiple levels but amongst other things it will be a way for him to learn more himself....it's been a struggle knowing how much to tell or not tell him at times...my parents don't want him to freak out so don't give him the nitty gritty. i don't hide things but we haven't lived together for so long that he just hasn't seen me much aside from holidays and i hesitate to tell him as much as i wish he knew at times.

and of course there will be at least a small group at syracuse who will now be very informed. a huge plus in my book whenever there's the chance for anyone to be more in the know.

different parts of his project are due throughout the semester & of course he chose to call me with a bunch of questions the night before he had to casually present his topic in class....ah well. i sent him a bunch of info already of course...probably too much B)

but i wanted to share my little bro's efforts with ya'll.

B) melissa

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THat's great, atleast more people will know it exists!

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Wow Melissa..you must be so touched..sounds like you've got yourself an awesome brother! :unsure:

It's amazing how information on this disorder spreads....apparently ALL of my friends and family have told at leaste one person about me and POTS..and it's spread from there. One of my best friends is an attorney in a "small" town here in AL and she constantly has people coming up to her asking about me...keep in mind I live over 200 miles away and have never met any of them...some of them she didn't even tell..they heard it from and friend of a friend..ect.

I really makes me feel loved to know that those I care about are out there advocating for all of us.

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that's so cool! It's got to feel nice to that your brother, in a sense, is validating how hard it is for you, and recognizes that it's a true disability-- many members, myself included, have often lamented about unsympathetic and/or uninterested family members. I'm happy for you :unsure:

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thanks for sharing in my :D about this gang.....and yep, my bro is definitely a cool guy. he'll be a good catch one of these days. handsome/cute, caring/thoughtful, talented, athlete, hardworker, smart, and he loves to cook (bonus, eh?). so now that i seem to be writing his personal ad.....i guess he'll get an ego boost if he comes across the post while doing work on his paper :)

but yeah...i hadn't even totally thought about it in the way you mentioned nina but that is SO true. i think that b/c he's not a big talker (though more than a lot of guys) i've sort of always wondered what he thinks about things but don't really come right out and ask him. i remember he sent me a card with a really sweet note once last year that showed me that he did "get it" at least some and it meant the world to me.

little things like my having a rough time with the steps at the movie theater when we went over break it but trying not to show it, my thinking that not going to a regatta of his in the spring would probably be better than going but having to use my wheelchair, etc...i don't know why but i just have a harder time letting down my guard with him. maybe b/c i'm supposed to be the "big" sis? i dunno.....

and yep, while my immediate family is great now, there have been rougher times in the past. and some of my (past) friends, extended family, etc. still SO don't get it. i realize some may never no matter what.

but yep, my brother gets major kudos on this one.

B) melissa

p.s. wareagle....that's so cool that you have so many out spreading the word too!

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