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Public awareness


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Hey there..

it is after 3 am here in my little corner of cyber space.. and I was thinking.. what can I do personally to help raise awareness of dysautonomia??

And how can I get envovled in the stuf that is allready in the works to raise awareness???

Michelle or Nina.. any pointers??

my brain is on full speed tonight.. and I got to thinking about pots.. and all the people on here who suffer from this..(not to mention all the people out thre who are suffering b/c they cant get a doc to take them seriously!) and how some get treat poorly wheather it be by family..employers. co-workers,friends,, and as sad as this is the medical community..

SO I'd like to know what I can do to help make a difference..

what about distributing flyers to dr.'s offices?? and hopsitals in the town you live in and towns around you.. can make em and print them up off the computer...

I dont know forgive me I f iam not making anysense... as it is 3 am.. and I wish i were sleeping!!

dizzygirl :)

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Personally for myself, what I do to expand knowledge of this problem whenever I'm able to anyway, is share information on how this problem effects the persons life and symptoms with medical students who are studying with our cardiologist. She is great about having Med students observe & train through her practice continually. Whenever we can, all three of us are seen there and while on our visits with her, she has always had new students come through and they are very interested in learning about it. Infact, the cardiologist sits and listens as well and asks if we mind discussing these things with them. (she's a keeper!).

They are also very interested in the Ehlers Danlos syndrome and effects, symptoms, etc. So its good for us on one hand and a learning experience for them as they don't get the opportunity to study such disorders at any great length at med school. Infact I did this again today as I had to have a stress test done and met a new med student (observing) this time around as well. He was very interested and eager to hear about EDS & the blood pressure issues.

I figure in the future, if they meet someone else who is complaining with this stuff they will hopefully understand the issue better and maybe catch the diagnosis for someone else at an earlier stage to avoid prolonged frustration as I had to endure.

Good luck, I know they have some great information brochures listed on this site for distribution as well.

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As stated by Sally, Dinet has already started a campaign to distribute literature to doctors and the general public. There are also the official Dinet bracelets and cards. We talked recently about invisible braceletes as well to promote awareness of invisible illness. For me personally, on a daily basis I seem to find at least one person who is very interested in learning more about what is going on with me. I don't like to sit around and complain about med problems but having my port (and/or iv) visible prompts questions. I answered as informatively as I can, and encourage people to not ignore "heart" symptoms in young women because sometimes they do mean something is going on. I have encountered doctors, nurses, dentists, and many, many other heart patients intrigued by the area of dysautonomia. It is amazing how many people I've met who have someone they know going through a similiar expereince and unable to get answers. I usually tell them what I know and direct them to this site. So, for me public awareness actually comes one person at a time. Hope this helps!


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Thanks for wanting to do something! If everyone did "something" many more people would know about dysautonomia.

As previously stated, we are currently getting the word out there through an informational brochure campaign. We also sent letters out to all of the doctors on our physicians' list, hoping to gather information that they created on these disorders to pass onto our members. Unfortunately that campaign wasn't very successful.

We are always trying to think of ways we can spread the word. We usually stick to running one campaign at a time, mostly because our funds are limited. If you would like to help in the future, please send me an email and we can talk further.



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Here's my little addition to public awareness--my t-shirt I had made to wear during my run, which you can look at via my blog.


I also wear my DINET bracelet, and about once a week, someone will ask me what the bracelet is about and gives me an opportunity to let folks know what dysautonomia is.


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I looked at your t-shirt..I really like it...

You call your self Mighty Mouse...and it fits you well.. as you have incredible strength and courage... and weather you know it or not.. you have offered people alot of hope and inspiration..(me included!) when you announced about your signing up to run in a race..

WOW! if that isnt determination and pure willpower.. i dont know what is!!

You go NINa.. your make it through the race one way or another..


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I received a phone call from the head physical therapist in the group Rachel saw over the summer. Rachel had PT (primarily water) with a PT group affiliated with a nursing home. She wanted to talk about a presentation that she is putting together for PTs about dysautonomias and the role of PT!!!! :P I was so happy - this woman was great. She has already done some research and wanted more info about both Rachel and dysautonomias. I did give this site as a reference. It is exciting to that more are interested and learning about these disorders


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Since there is supposed to be around 500 000 people who suffer from this in the sates i thought there would be more knowledge out there... pages like this do wonders :P

Maybe you could start a support group for your area? Im not sure where you live or if its very populated.... its just an idea.

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that's SO cool louise...

before i had to stop my field placement/internship at the beginning of the year my supervisor had talked to me about presenting to the physicians at the agency (a community health center). hopefully similar opportunities will arise again.

with all the self-advocacy i'm having to do at school, LOTS of people are getting to hear from me; some is dysautonomia-specific & some is general disability advocacy, but they're hearing from me like it or not.

like others have mentioned, questions about my bracelet open the door for conversations with people on a fairly regular basis.

and as i make it clear that i'm pretty open to questions, my using a wheelchair, etc ...a number of my classmates have asked me more as the year has progressed...so there will be some up & coming social workers in the know (as well as some of my undergrad buds who are in med school now, nurses, etc).

i also make a point to ram as much info as possible down the throat of docs, nurses, other medical personal i come across who aren't in the know re: dysautonomias...

and i'm planning on trying to head up a cleveland area get together in the near future...

i think the bigger campaigns & the "little things" we all do day-to-day do make a difference...even if it's hard to see that difference in the here & now.

:P melissa

p.s. nina, i LOVE your t-shirt (and can't remember if i told you so in your 5K post...)

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