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Dysautonomia awareness ideas?


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Hey Everyone.... in case you don't know October is Dysautonomia awareness month! I usually like to post different facts and information about dysautonomia on my Facebook every day or at least several times a week. I've been doing this for the last few years and I'm looking for new stuff to post. I don't want to keep posting the same things each year. So does anyone else do anything different? Or does anyone have a story or article they would like to share with me, that I could share? One year a friend on Instragram did a photo challenge for the month and she had a theme for each day and you could take a pic of something and write a post about it.  Please share your ideas, any ideas will be welcomed! I think educating others and helping them be more aware of our conditions and also what we go through is very important. They may not be able to understand everything, but at least we can get the information out there for them. Thanks in advance. Oh and if you don't feel comfortable sharing your story on here but still would like for me to hear it you can message me.

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I think the daily challenges would fill a calendar, maybe start with waking up and don't want to get out of bed because it's standing vertical after being horizontal while you slept. Every hour of the day is a post of the will and endurance we have to make it to the end of the day intact. Fill the pages with photos or drawings, make some tee shirts about your endurance and sell them on ETSY. Be creative and overall show that you are getting on with your life in spite of everything an invisible illness throws at you. I am on FB, I am Trudi Greissle Davidoff, if you send me a friend request I can see your posts.

 

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I was actually having a discussion with someone about this, and we talked about doing sort of a "Humans of New York" sort of thing but instead it's Humans of Dysautonomia and it features people's photos and stories about how dysautonomia has affected their lives. I even created the social media pages and reached out to a local dysautonomia community, but that's about as far as it's developed so far.  I'm hoping to actually get it off the ground and running this month, but would like input and help from other people in the community if you're interested? 

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trudi..I will send you a friend request. My name is Rebecca schwinabart. I found a dysautonomia support page on fb that is posting daily prompts and pics for this month that you can use for posts.

And Vepa I would love to help you if you want, so feel free to message me and let me know more about it.

Thanks

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22 hours ago, vepa said:

I was actually having a discussion with someone about this, and we talked about doing sort of a "Humans of New York" sort of thing but instead it's Humans of Dysautonomia and it features people's photos and stories about how dysautonomia has affected their lives. I even created the social media pages and reached out to a local dysautonomia community, but that's about as far as it's developed so far.  I'm hoping to actually get it off the ground and running this month, but would like input and help from other people in the community if you're interested? 

I think it's a wonderful idea. Some may initially feel privacy concerns for sharing such intimate information about our lives but I think once the ball gets rolling it will become an excellent and inspiring collection of first-person narratives.

 

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6 hours ago, WinterSown said:

I think it's a wonderful idea. Some may initially feel privacy concerns for sharing such intimate information about our lives but I think once the ball gets rolling it will become an excellent and inspiring collection of first-person narratives.

 

Obviously, I wouldn't share anyone's personal or medical information without their consent. The people who participate are doing so of their own choice and have complete control over how much they want to share. A few people are already expressing interest so I'm pretty excited about it. 

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21 hours ago, vepa said:

Obviously, I wouldn't share anyone's personal or medical information without their consent. The people who participate are doing so of their own choice and have complete control over how much they want to share. A few people are already expressing interest so I'm pretty excited about it. 

I look forward to seeing this get started, it's a wonderful idea.

 

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