Monday, March 23, 2015

MONDAY MARCH 23, 2015

I've been pretty busy this past week, with lots of school related things, but I did do a little research. I'm hoping that this week will be a little quieter and allow me to get some more things done. I did however find a really cool foundation in the time I had. It's called the LiFe as a Zebra Foundation. It was cofounder by these two women that have not let their invisible illnesses define them. Life as a Zebra has been nominated for multiple health activist awards and one of the founders was a finalist for the WEGO Health Award. At this point you are probably wondering why it is called the Life as a Zebra Foundation. Well, according to the website, doctors are taught to diagnose their patients based on the condition that is most obvious. They say that the idea goes along with the saying, "When you hear hoofbeats, think horses, not zebras.” They go on to explain that "The horses are the likely explanation, while the zebras are less likely. A medical zebra, then, is a person with a rare medical condition." The foundation has an awesome saying that they put on their apparel, that says, "zebras have hoof beats too."  I will leave a video below for more about the two women who started the foundation.




Friday, March 6, 2015

FRIDAY MARCH 6, 2015

So this week I did  a lot of research on dysautonomia organizations. In looking I found Dysautonomia International, an organization committed to researching and raising awareness for dysautonomia. They have loads of information about the disease and how it affects people. They also have pamphlets and articles available for families and friends, or just anybody who is interested, that explains what people with dysautonomia go through and how to be there for them. When my friend first got diagnosed with dysautonomia the first two things I looked up, were what dysautonomia was and how to help and support a friend who has been diagnosed with it. During both of these searches, the first website I found that I liked that answered my questions was Dysautonomia International. The website also has a really cool interactive map of the world, that shows people with dysautonomia from all over the world, as well as the doctor that specialize in it. For anyone who's interested, I'll leave a link to the map below. I think things like this map are important, because people who live with these in invisible diseases often start to feel alone and isolated. When they can no longer go ou with their friends or go to school, or even do the simple things in life, they begin to feel that the world is leaving them behind. They need to know that they are not alone. This is one of the reasons that it is hard to believe that barely any doctors know about dysautonomia. If there are so many people in the world that have been diagnosed with variations of this disease (over 70 million people worldwide), then how can it not be important enough for doctors of this day and age to know about? People should not have to wait years before they get diagnosed and recieve medical help!

This week I also joined Dysautonomia International's Awareness Army.  People in the Awareness Army volunteer their time to help set up fundraising events and raise awareness. There goal is to "make  Dysautonomia a household name." I sent in my volunteer application, but I am still waiting for someone from th organization to email me about what I can do to help. Hopefully they will get back to me soon.

Another thing I have been doing, is looking into buying wristbands that say Dysautonomia on them to sell to raise money for dysautonomia research. I did some research on the Mayo Clinic website and they have a way to choose what part of the clinic you want the money to go. I will be doing further research into these wristbands this week.




http://www.dysautonomiainternational.org/map.php