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WinterSown

October is Dysautonomia Awareness Month

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What are you doing to increase awareness? I am doing a fundraiser on my FB page and I will also be sharing info links about symptoms, management and diagnosis every day for October.  Education is vital to ourselves as well as our friends, families, caregivers and especially our doctors. If you can get one doctor or nurse to understand the symptoms or even that we are to be believed you will have made a positive contribution.

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I hold classes about dysautonomia at our local college, share new studies with my docs and work with local ER's and PCP's to educate them about POTS. I am also in the process of starting a local support group for dysautonomia sufferers. 

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You guys are wonderful! :)

I was thinking about this the other day... I think for me I need to start with self-acceptance. That part was harder than I thought it would be, even though I already suspected I had POTS. Next is sharing and educating friends and family in order to help them understand and spread awareness!

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@jklass44 - acceptance is a big one and does not come easy. It took me years b/c after loosing my RN job to POTS and mostly housebound I had lost my sense of who I was. I felt like if I accept my condition than I have to accept "being useless". But then I found the dysautonomia project and bought two of the books for me and my PCP. I encountered many ER docs who had no idea about POTS and the task of advocating for myself and fighting them was soooo frustrating! I reached out to the local college and started holding classes about dysautonomia and OI to the nursing students. They always find it very interesting. I even had to go to the ER once and the RN treating me knew about POTS because of my class!! I offered talking to the medicine students too but that - of course - did not go anywhere ( "who does she think SHE is?). There are many avenues to educate about dysautonomia. I found that our friends and families are very hard to educate. My husband is very knowledgeable about it but his parents or friends of ours seem not to understand or want to learn, partly because it is so complicated. --- I encountered a few POTS patients over the years and was able to inform them of resources and also my cardiologist - wonderful man - gives out my email to other dysautonomia patients so I can share the many online resources. This has given me a renewed sense of being helpful despite my disability. --- I wish you well in the task of reaching acceptance - it will come!!!! 

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I am not ready for acceptance, I wrote about it in the last newsletter. One of the best things that came from doing advocacy is that it has had a wonderful effect on my management and care. My doctors know I understand the condition and how I stress the necessity to establish unique and individual management programs, especially as we age. We are all unique and need care tailored to us, not some one-size fits all treatment. Let your doctors know what you are learning and doing, what info you are sharing to help others. Doctors are usually impressed with patient advocacy and it will improve how they treat you all around.

Never give up, never surrender.

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Hi all, thank you so much for all you are doing to help with raising awareness for dysautonomia.  It truly takes all of us bringing it to the forefront of people's minds - including and most importantly, the minds of the medical community.  

Please check back to the site and our Facebook page to see DINET's latest announcements and the efforts from other members to raise awareness for dysautonomia.  I will include the info listed here on our Member Awareness page launching this week.  If you know of any other members who would like to share their efforts with us, please ask that they email the info to webmaster@dinet.org with the subject line "Member Awareness"

Thanks again and best of health!

Ellen Driscoll

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@Pistol Sounds like I’m having a similar journey. I’m a veterinary nurse so I relate to how hard it is to keep working in that environment. I also purchased The Dysautonomia Project over the summer and it’s a great read! I definitely recommend it to others who feel they are struggling. 

@WinterSown Thank you for posting that link! I will for sure give it a read later tonight. 

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Are there links to videos/images that we can share with family and friends that explain dysautonomia in laymen terms? I feel like most people's eyes will glaze over and they'll keep scrolling if I get too technical. :P

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@Lainy - on this site go to the information tab, there are several excellent sites listed, including one for family of dysautonomia patients. 

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