Dysautonomia Awareness Month 2013

In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from Dysautonomia SOS you can share to spread the word:

Sized for Facebook and Instagram.

General flier.

Sized to be a profile pic on Facebook.

I love all my POTSies :)

Humor is the best weapon sometimes!

See? Humor. Win.

This is sized to be a Facebook header.

Happy October!!!! Let's spread the word homies!
---Claire

It's here! Dysautonomia SOS's Website is FINALLY Here!

YAY! The Dysautonomia SOS site is up and running. 

Here are a few sneak peak pictures. I will be back blogging more actively now, looking forward to it!

Thanks to everyone that helped make this a success! 
--Claire

Find Others! Join The Dysautonomia Social Media Directory!

Let’s connect online! Add yourself to our interactive map and find others online and in your area. You can upload pictures, online contact info, blogs, websites, and more!
https://www.zeemaps.com/map?group=460425#

***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.
THANKS!
https://www.zeemaps.com/map?group=460425#

Hydration, Salt, and Peeing: The Renin-Angiotensin-Aldosterone System

I guess I should use the technical name for peeing in this title - urination - but it's a catchier to say pee.  Because that's what many of us POTS folks do (and various other forms of Dysautonomia), we pee A LOT.

Why is this?  And why the heck do we have to eat so much salt?  

Well, there is this thing called the

Renin-Angiotensin-Aldosterone System.

 

It's a big deal. It takes place mainly in your kidneys and adrenal cortex, and affects your blood pressure directly.  Lets break down the three components:

 

1. Renin is a protein (enzyme) released by special kidney cells when you have decreased salt (sodium levels) or low blood volume, and stimulates the formation of Angiotensin in blood and tissues. 

2. Angiotensin then undergoes a series of reactions that convert it to Angiotensin II (AII in the diagram below), which in turn stimulates the release of Aldosterone from the adrenal cortex. 

3. Aldosterone is the main mineralocorticoid (steroid hormones that balance electrolytes) hormone secreted by the adrenal cortex, the principal biological activity of which is the regulation of electrolyte and water balance by promoting the retention of sodium (and, therefore, of water) and the excretion of potassium.  In plain English - Aldosterone helps your kidneys retain salt, and therefor retain fluids, helping to keep blood volume and blood pressure up.

Here is a diagram of the entire system.  

Volunteer Positions for Dysautonomia SOS!

We are on our way!  Very excited about the amazing team we have forming for Dysautonomia SOS, the new Non Profit serving VA, DC, MD and beyond.  A formal announcement will be coming soon, but we still need help!  If you or any family/friends are intersted in volunteering, please contact us at dysautonomiaSOS@gmail.com.  Together, we can make a HUGE difference!

Dysautonomia SOS Volunteer Project List

Dysautonomia SOS is a new Non-Profit organization forming to better serve the VA/DC/MD area’s dysautonomia patients, as well as providing materials for everyone online.  We need your help to get up and running, and start improving the lives and treatment options for patients. 

If you are interested in any of the following projects, please email Claire at dysautonomiaSOS@gmail.com.   Please use the exact project name to identify what you are interested in.  Feel free to tell us about yourself so we can get to know you as well.  Patients, family, caregivers, and friends are all welcome to volunteer!  Thanks for your interest and support in making this a success!

Physician Listing Coordinators:  Update the physician listings for VA, DC, and MD.  We will need the name, specialty, facility name (if applicable), phone, email, and full address. We are looking to list anyone who treats and has experience with dysautonomia, including primary care/internal medicine doctors.   If you would like to research a specific region, let us know.

Content Editors:   Review materials for the newsletter, web content, brochures, scientific write-ups, and any other content to check for grammar, punctuation, and content accuracy.   

Science Writers and Advisors:  Looking for anyone with a scientific or medical background to help write educational materials for a variety of projects, and review materials periodically.

Newsletter and Feature Contributors:  We will need contributions for our newsletter and web features on a regular basis. Everything from patient stories, to regular columns related to living with Dysautonomia.  Parenting kids with POS, caregiver stories, diagnosis stories, treatment options that have worked for you, etc…

Sponsorship Coordinators:  Collect and research local/regional potential sponsor information.  Anyone providing services that pertain to dysautonomia, or any personal contacts with businesses that would be willing to be a sponsor need to be compiled and eventually contacted.  If you would like to research a specific region only, let us know.

Events/Fundraising Coordinator:  Oversee and aid with local and regional events.  Find creative ways to fundraise for the organizations projects and research we are supporting. Professional event experience preferred.

Accountant/Bookkeeper:  Someone with NPO  to prepare our annual report and help with bookkeeping.

Regional Support Group and Event Hosts:  VA/DC/MD is a large region!  If you would like to host an event or support group in your area, let us know.  Whether it be a Skype meeting, in person, or an official event, we will need as many people as possible helping with this.  

Social Media Coordinator:   Make sure all social media accounts are up to date and the latest news is being shared about our organization in a professional manor.   

Media Blast Brigade:  We need lots of “Re-Tweeters” and “Re-Posters” of important news and announcements across social media.  If you would like to updated on any new happenings or announcements that you can share with your network, send us an email and we’ll keep you posted (so you can re-post!).  This is a VERY important part of our awareness campaign!

General Volunteers:  We will always need volunteers!  Want to be notified when new projects and positions come available?  There a ton in the works.  Email us and we’ll keep you updated!

Non-Profit Organization Update: How To Get Involved

I have mentioned on this blog before that I am co-founding a new Non- Profit.  Some things have changed that I wanted to disclose and update you all on.

HISTORY OF THIS PROJECT:
Back in November or so, I had started putting together thoughts and ideas for a new Non-Profit Organization (NPO) that would help improve the situation across Virginia, the DC area, and MD.  I had big ideas about how to help people avoid what I have gone though for the last 10 years, but knew I could not do it alone, especially from a bed on a laptop.  Part of my vision was uniting all the bloggers and organizations into one happy Dysautonomia awareness family, because everything seems very disjointed and fractured.  Well, Team Fight POTS was birthed out of that, and it has been great to work with other bloggers and activists, and hopefully we have helped people along the way.  Unfortunately, after reaching out to a few non-profits, not many actual organizations are willing to work together it turns out.  Bloggers and frustrated patients, yes - organizations, no.  So I decided I would start my own.


I began with this blog, and Team Fight POTS came shortly after, and in the process met a few folks with the same idea.  Originally we tried to work with an existing NPO, but eventually decided to work together on a completely new NPO, Dysautonomia International, which I have mentioned on here before.   

Unfortunately, after lots of hard work and many hours, I resigned and am no longer working with the group Dysautonomia International for a variety of reasons. We have some irresolvable differing issues and ideas about how to best achieve our goals, and I actually am going back to focusing on VA, DC, and MD.  The situation here for dysautonomia patients is BAD, and there is a massive lack of resources and public knowledge.  That needs to change.  That can not be done with a blog alone.

We already have an amazing group of people to get things started (or continued, actually), and we are filing paperwork and finalizing our web content and team.  More details will follow as they evolve.  My goal has always been to educate educate educate - and empower patients to improve their lives.  


So the new non-profit will be called.....drum roll please........

Dysautonomia SOS: Searching Out Solutions 

The NPO will focus on improving local resources, but will also provide (many free) materials for anyone anywhere with dysautonomia.  Our focus will be on the Orthostatic Intolerance disorders: POTS, NMS/NMH, OI, and OH.  We will provide basic info on the others.  We have BIG PLANS for our region, and helping patients get the treatment they deserve, access to the resources they need, increasing awareness, and raising funds for research.   AND FINDING YOUR POTS CAUSE! We hope to work in conjunction with a nationally focused NPO, and we'll see what happens, and few things are in the works.

We have a great group of volunteers and medical advisers, but are looking for more help.  We are 100% volunteer run, and applying for 501(c)(3) tax exempt status.  We are laying out clear cut ideas and goals so that everyone that volunteers knows where we stand and what we want to achieve.  They include (but are in no way limited to):

• Focusing on POTS, Syncopal disorders (NMS/NMH, OI, OH), Autonomic Neuropathy, and finding the underlying causes of these disorders.   Providing information of the other forms of dysautonomia and links to resources,
• Empowering and educating patients, caregivers, medical professionals, and the public by providing credible, medically reviewed educational materials and solutions for everyday life, available for FREE to everyone online,

• Providing free brochures and access to these materials in doctor’s offices, hospitals, schools, and other applicable public places across the VA/DC/MD region (you will be able to order these materials to print and distribute in your own region outside VA/DC/MD as well), thus increasing public awareness, decreasing diagnosis time, and improving treatment options for dysautonomia patients,

• Funding research, fellowships, new autonomic equipment, and projects that directly impact and improve the lives of patients in VA/DC/MD, &

• Working together with the medical community , other organizations, and public to provide support and improve the quality of the lives of dysautonomia patients in our region and around the world.

If you are interested in volunteering, even a small amount of time - please email me for a list of positions and needs we have right now, or if you want to receive updates and info on volunteering as it becomes available.  And you don't have to be in VA/DC/MD or know about Dysauutonmia to get involved!   I still hope to work with the other organizations out there, I really feel like we are such a large patient population, and we need to unite to get things done, especially regarding awareness and research.

This may be wishful thinking, but who knows?

If you would like to apply to be on our Medical Advisory Committee or Board, please email Claire at dysautonomiaSOS@gmail.com.  Volunteers do not need to be located in VA/DC/MD, as we will be providing services that aim to help and are available to EVERYONE.  

Thanks!
Claire

Fainting: The Final Frontier ( and Neurally Mediated Syncope)

Fainting. 
The final frontier. 
These are the voyages of the vertically impared, set out to reach new heights of embarassment - flashing panties and falling where no one has fallen before. 

(Dooo-do-do-do-duh-duh-dum dhuuuduum!) <----That was Star Trek Next Generation music/refernece for those of you that happen to not be nerds.

So lets talk fainting.  I have been writing furiously for the new Non-Profit I am helping co-found (Dysautonomia International - website coming soon!), and by far the most difficult subject to summarize into a consise, easy to understand format was syncope and NMS (neurally mediated syncope).

So, here is a brief run down on fainting and fainting related dysautonomia disorders.

Syncope = Fainting = Passing out.  This means you have lost consciousness, or have come close and have gotten horizontal in time to prevent the actual faint, otherwise known as "pre-syncope."  This happens because there is not enough blood in your brain.  Many perfectly healthy peeople faint during their life time, and it is a one or two time event - and they have no other health issues causing it or as a result.  Or - it can be a sign of something serious.  There are many types of fainting, the most common being vasovagal, or reflex fainting.