I love to hear from you!

A BIG thank you to Mary over at A Body of Hope for making this for me! I love to hear from my readers and read your blogs! If you have a blog of you're own please share it with me! It is always great to hear from you guys and see what you're working on. There are so many talented people out there! Thanks again, Mary!

October is Dysautonomia Awareness Month! What are you doing to raise awareness?

This October marks another great annual Dysautonomia Awareness Month. It is always so awesome to see the patient community rally together and do amazing things to help raise funds to support research and help raise awareness in their communities. It's inspiring to see young kids participating alongside their parents, making noise for turquoise! Thankfully, turquoise is one of my favorite colors! I love to wear it and also have plenty of bright turquoise throughout my house. I even painted a pumpkin turquoise for Halloween this year. If you can, get out there and raise some awareness in your community. Tell someone about dysautonomia. Help educate a new medical practitioner who may not know what it is. Find a fundraising idea and donate the funds to research. Or purchase something on Amazon.com through this page and part of every sale automatically gets donated back to dysautonomia research (it doesn't cost you a penny extra, Amazon donates their share of the sale!)

There is lots happening online as well. Check out Facebook.com/DysautonomiaInternational for a daily dysautonomia factoid. I have learned SO many things I didn't know. There's also a live Tweet-A-Thon happening on October 23rd.

October was Dysautonomia Awareness Month! How Did You Celebrate?

It's the last day of Dysautonomia Awareness Month! How did you commemorate the occasion? Many people spread awareness online, through successful social media campaigns like "Thumbs Up for Dysautonomia Awareness" where people proudly sported blue nail polish on their thumbs to show solidarity and support for dysautonomia patients. Many others also took the opportunity to raise awareness in their communities by hosting fundraisers, educating physicians, or friends and family. It's important to realize that raising dysautonomia awareness doesn't end in October. It's a 24/7 pursuit. Individuals around the world are working tirelessly to spread awareness 365 days a year. For more ideas and information on how to keep spreading awareness or to host a fundraiser to benefit new and ongoing research, please visit DysautonomiaInternational.org.

POTS Letter For Students by Dr. Ahern and Stacy Reed, RN

For those of you POTS patients who are still in school and find yourselves struggling to get to class and managing to stay conscious and alert once you get there, this letter may be beneficial to give to your teachers, professors, school nurse or guidance counselor. I sure wish I would have had something like this to distribute to my professors during my senior year of college when I first fell ill with POTS. It would have made my academic life much easier and it would have been much easier for my instructors to understand exactly what I was going through. Trying to explain such debilitating and peculiar symptoms to people is often half the battle in my opinion. Luckily POTS patient Stacy Reed and her doctor Thomas Ahern have teamed up to create this letter which helps bridge the communication gap between students suffering from POTS and their instructors. Please feel free to use their verbiage and distribute this letter to your own teachers and professors, anyone who needs to know what you're going through on a practical level.

RE: Postural Orthostatic Tachycardia Syndrome (POTS)

To Whom It May Concern:

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome. This is a form of Dysautonomia, which is a malfunction of the autonomic nervous system, the system that regulates all of our automatic functions, such as heart rate, blood pressure, temperature regulation, blood flow, etc.

Patients with Dysautonomia often present with numerous symptoms. These include: loss of consciousness, a feeling that one is about to pass out, intermittent rapid heart rates, very low blood pressure, or significantly elevated blood pressure. Patients also describe symptoms of increased anxiousness, excessive sweating, recurrent headaches, dizziness, low-grade fevers, constipation, diarrhea, abdominal pain, and nausea.

Another symptom that impacts one’s school and work performance is the presence of periods of impaired cognitive function. Individuals who experience this often describe it as a “brain fog.” Patients with Dysautonomia are extremely sensitive to warm environments; avoidance of these environments is suggested. Prolonged periods of standing are extremely difficult, so patients may request to sit or lie down during class or work. As a result of these symptoms, individuals may also present with depression.

Intermittent absences from work and school are common.

It is imperative that patients have access to their prescribed medications, as well as fluid supplements and salty snacks. Access to fluids are necessary during class or work.

Other accommodations requested of schools on behalf of a patient include:

• Avoidance of known symptom triggers when possible.
• Permission to record classes and/or lectures, which can be reviewed at a later time.
• Longer test-taking times, 50% greater time.
• Communication with teachers of the individual’s condition, affirming that absences and slight delay in submission of course work may be necessary.
• The school nurse should be made aware that the normal sitting down vital signs are not adequate for these patients; orthostatic vital signs must be taken, supine, sitting, and standing heart rate and blood pressure, as well as the objective and subjective signs and symptoms in each of these positions.

It is important to understand the disabling nature of this condition. Although it is invisible to those looking on, it is very real to those experiencing it. Research has shown that patients with POTS have a quality of life similar to those with congestive heart failure or chronic lung disease.

(Information referenced from Thomas Ahern, MD, FACC; provided by Stacy Reed, RN, RRT-NPS November 2011.)

Dysautonomia Awareness Week 2011, Sept. 12-19, Pass it on!!!

Thanks to talented graphic designer Rachael Rodriguez for creating this awesome poster for Dysautonomia Awareness Week!

Remember to Email Dr. Oz About POTS on Thursday, September 1st!!!

Please help us raise awareness about Postural Orthostatic Tachycardia Syndrome ("POTS"). On September 1, 2011, we want 1000 people to e-mail the Dr. Oz Show about Postural Orthostatic Tachycardia Syndrome and ask them to do an episode about it. We want everyone to send the e-mail on the same day to have a big impact.

On September 1, 2011, please visit Dr. Oz's website and ask them to do a show on POTS: http://www.doctoroz.com/contact

We have included sample e-mails below if you don't want to write your own. Please RSVP to this 'event' to let us know if you will participate in this e-mail campaign. Please invite others to join us. We need as many e-mails as we can get!

SAMPLE LETTER FROM POTS PATIENT:
Dear Dr. Oz,
I am a (age) year old (gender) from (location). I am a fan of your show and I have diagnosed with Postural Orthostatic Tachycardia Syndrome ("POTS"). It took a really long time to get diagnosed because not many people, even doctors, know about POTS. The experts at Mayo Clinic say there are at least 500,000 people in the U.S. currently diagnosed with POTS, and that there are probably another 500,000 people in the US who have it, but have been misdiagnosed. Your show would help raise awareness about POTS amongst the general public, and even within the medical profession. Please do a segment or a whole show on POTS.
Thank you,
(your name)

SAMPLE LETTER FROM FAMILY/FRIENDS OF POTS PATIENTS:
Dear Dr. Oz,
I am writing to you because I would like you to do an episode on Postural Orthostatic Tachycardia Syndrome (POTS). My (friend/sister/spouse, etc.) has been diagnosed with POTS and it has really impacted (his/her) life. Mayo Clinic estimates that there are 500,000 patients in the U.S. currently diagnosed with POTS, and that there are probably another 500,000 patients suffering from POTS who have been misdiagnosed because there is a lack of awareness about POTS amongst the general public and in the medical community. Highlighting POTS on your show could go along way to increasing public awareness of this syndrome. Please do an episode on POTS on one of your upcoming shows.
Thank you,
(your name)

DINET Needs Our Help!!!

If you haven't done so already, please read the Spring 2011 edition of DINET's quarterly newsletter. I have been a newsletter contributor since last year when they were seeking volunteer writers. Now, however, DINET (Dysautonomia Information Network) is seeking a new president in order to keep the organization afloat. I know so many brave, strong, articulate and amazing individuals who would be perfect for this position. Please do not be intimidated by the title, people of all backgrounds and experience levels are encouraged to apply. If you have any experience with dysautonomia and any interest in being a leader for DINET, I would strongly encourage you to apply. It is an honorary volunteer position and current president Michelle Sawicki has simply reached a point where she has too little time and energy to devote to the organization.

This is a wonderful organization and an important resource for all of us to refer doctors, friends and family to in order to help them gain understanding and awareness of this debilitating and complicated condition. In fact, DINET.org was the trusted website my electrophysiologist referred me to upon my diagnosis. Let's each do our part to keep it up and running.