Who We Are: Diss the Dys

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Audio for Message from Founder: 

Diss the Dys

Diss the Dys is an awareness campaign for the medical condition of Dysautonomia. We hope that someday we can dissolve the concept that dysautonomia is a debilitating, completely life-altering health condition. We hope that someday we can dissolve the fact that there isn’t enough knowledge about dysautonomia in the medical field, and as a result, Dysautonomia Warriors are in need of more effective treatment options. We have these hopes that more awareness of dysautonomia will result in more funding for research, so life-changing advances can happen in the future!

This campaign is determined to propel Dysautonomia Awareness to a level where we can finally learn more about the autonomic nervous system and what causes dysautonomia to be so debilitating. We need more education for both patients and providers, so that patients are more aware of what they will experience as their dysautonomia progresses. We need more education for providers so that they can diagnose patients more quickly before their quality of life decreases so much that they can barely function. We need more education so that patients with dysautonomia don’t have to suffer through misdiagnosis after misdiagnosis and being subjected to treatments that may not even be helping. We need dysautonomia to be “mainstream.”

With dysautonomia, patients have to explain all the complicated and endless list of symptoms, even to doctors and medical professionals. We will never forget a doctor once saying on a dysautonomia webinar: “when a patient with a chronic illness, like diabetes, comes into a doctor’s office, the patient doesn’t have to explain themselves, but when a patient comes in with autonomic dysfunction, they sure do.” This is very true for us Dysautonomia Warriors. We have to explain our whole life story that is nearly impossible to fully be grasped because our health history is full of great complexity.

Diss the Dys hopes to help dismantle the lack of awareness and inspire more people to want to go to medical school to become dysautonomia doctors, experts, researchers, scientists, and the ones who will find more treatment options and eventually a cure!

The Inspiration Behind Diss the Dys

A Message from the Founder of Diss the Dys: Kate            

Something Robin Roberts said while battling cancer has always stuck with me since high school and became my main motivating factor behind starting my dysautonomia awareness campaign called Diss the Dys.

Robin Roberts’ mom told her, “Make your mess, your message.” I will never forget the day that I heard Robin say this phrase on the television. I used to keep my medical journey private, even to friends and family, but because I have internalized Robin's words for over fifteen years, I have decided to turn my mess into my message,  and start this awareness campaign.

I know that I am not alone in my struggles and fight with the devastating effects of dysautonomia. I believe that there is a way to improve the lives of people with dysautonomia and give them back some of their health. I want to turn my mess into a message so that there’s a greater possibility for a cure or treatment to be discovered. I want to be able to help people even if it means that a cure or treatment comes for future generations of Dysautonomia Warriors.

I can attest to this journey as a Dysautonomia Warrior. There are millions of stories coming out of support groups and the sheer lack of knowledge about what causes dysautonomia, the lack of care, and the lack of a cure. There is also a significant lack of physicians and researchers specializing in dysautonomia. There are less than a hundred doctors in the world who specialize in this, and even then, there is such a lack of understanding about the mechanisms that cause dysautonomia. The current treatments are not effective enough to improve a Dysautonomia Warrior’s quality of life that is needed for them to be a productive person in society. 

Even though my dysautonomia unexpectedly worsened and I had to stop my career in 2021 at the age of 32, I know that dysautonomia is not going to take me down. We have to work together so that others can feel hope and progress about the state of their dysautonomia disease. As someone who has lived the experience of lifelong dysautonomia, who suffered from misdiagnoses and endless treatments, I know what it means to have dysautonomia take over your life. However, I’m determined to turn my mess into a message to propel awareness of dysautonomia, in hopes to increase research, to gain more knowledge of dysautonomia and the autonomic nervous system, to have more effective medications specifically for dysautonomia, and someday, a cure! 

Let's start to increase Dysautonomia Awareness!

 Here's the audio for Message from Founder: