I am so excited. Mark your calendars! January 5, 2012 at 9PM Eastern Standard Time will be the first ever meeting of the International POTS Patient Support Group. You don't have to buy a plane ticket or drive hours across the country to attend this meeting. All you need is an internet connection, a web cam and a free Skype account. We are going to meet "face to face" online using Skype!
How It Works:
If you don't already have one, get yourself a free Skype account. Visit Skype.com and click on "Get Skype" and then pick which format you plan to use - they have a free version for Mac, PC, and several mobile devices. Do a test call so you know how to use it before our meeting.
At 9pm (EST) on January 5, 2012, turn on Skype and on your Skype dial pad type in - BeachPlumBum. That is my Skype "phone number." The first 25 people to call me will be admitted to the call and you will all be able to see each other. Unfortunately, the free version of Skype only allows a max of 25 callers. If we get more than 25 callers, we may hold meetings more than once, or have two separate meetings happen at once - led by two different hosts. We will make it work so that everyone can participate who wants to. For now, we will hold our meetings once a month. The next meeting date will always be posted on my blog.
Since it could get chaotic with 25 people all trying to speak at once, we have put together some basic ground rules we ask everyone to follow, so that our first Skype call can go smoothly. I will lead the first meeting. Other people who become involved with the group can take turns leading the Skype calls in the future. We will be very democratic and give everyone a chance to speak. For the first call, I will go around the "room" and ask everyone to introduce themselves one at a time. You may want to share your name, where you are from, a little bit about your experience with POTS, and what you'd like to talk about on this call, or what topics you'd like to have the group talk about on future calls. We ask that anyone who has a comment the'd like to add when someone else is speaking, please raise your hand so that your hand is visible on your webcam to other members. The leader of the call will call on you and you will get your chance to speak. I know it seems a little childish, but that is the best way to make sure it isn't just 25 people all talking at the same time. Once we have done this once or twice with a large group, if we can think of a better way to run the calls, we will change the ground rules. If you have any good ideas about how to run the calls, or what topics you'd like us to cover during the calls, please e-mail me at POTSgrrl@gmail.com. I am always open to suggestions.
Why are we doing this?
We are holding monthly meetings on Skype, because we know that many POTS patients are too sick to travel and many cannot even get out of bed. This is a great way to socialize with other POTS patients who know what you are going through. We are also hoping that these online meetings will be the foundation for a new coalition of informed and savvy POTS patients who will be able to advocate for POTS research, funding and increased awareness within the medical community and amongst the general public. We need to organize ourselves as a community and hopefully these meetings will help us do that.
Shortly after I was diagnosed, I started thinking of ways I could connect with other POTS patients, because I believe a well connected network of informed patients the the first step towards forming an organized and effective POTS patient advocacy group. This blog was one of the things I started to help reach that goal and since then, I have found many other great POTS blogs written by patients or groups of patients. I got together with some of my online POTS friends and started a very active POTS Facebook group(see below for details). The monthly "face to face" meetings are a natural outgrowth of the Facebook group. We have a core group of over 200 patients on Facebook who talk to each other on a regular basis and it is about time that we start to see in other "face to face."
POTSgrrl is on Facebook:
In addition to the monthly Skype meetings, all POTS patients and parents of children with POTS are encouraged to join the Facebook group I helped found with some of my online POTS friends. It is a private group, which means that you can't find it on a search of Facebook. This was done to protect members privacy, as not every POTS patient is comfortable telling their friends, family or employer about their POTS symptoms. You can post questions to the group, and rest assured you will find others with the same symptom or who can give you good advice on any topic. It is a very active, supportive, intelligent and compassionate group of people who are all interested in one thing - trying to recover from POTS and trying to live their best life everyday. We have over 200 members and we are adding more people everyday. I you want to join the private Facebook POTS group, please e-mail me at POTSgrrl@gmail.com and tell me your Facebook screen name so I can add you to the group.