My Fight to Bring Awareness of Autoimmunity to SXSW


We all want to be healthy.

But the reality remains, many people are not well. Millions teeter precariously on the edge between health and chronic disease: for example, obesity, diabetes, cancer, cardiovascular and 100+ autoimmune diseases.

So why do recent health trends emphasize wellness and fitness more than preventing or managing disease?

This was the issue glaring enough to bring this clinical dentist, Wall Street analyst, and mother of four to jump headfirst into yet another full-time career, after having cycled my way through at least seven others.

My journey to autoimmunity activism started out as a personal mission. I draw my passion and sense of urgency from a desire to prevent disease in my grandchildren. My family, extended family, and close loved ones all struggle with autoimmune diseases. With vague but troubling symptoms, their attempts to find diagnosis and treatment have been disappointing.

I soon found that this was not just the case for myself and my family, but for millions of others as well. Autoimmunity remains vastly under-recognized and underserved:

  • Approximately 16 percent of the US population have an autoimmune disease. That is about 50 million people or one in six Americans.
  • As of 2014, on average, it takes autoimmune patients 3.5 years and five doctors for a diagnosis, while 51 percent are labeled as chronic complainers by their healthcare providers.
  • Despite affecting more people than cardiovascular disease and cancer combined, autoimmunity receives less than six percent of NIH funding.

After seeing the innovations in digital health and the possibilities they present, I could no longer sit on the sidelines and watch as my family and millions of others struggled.

Over the past few years, I have been able to use these advancements in technology to help raise awareness of the invisible autoimmune epidemic: From documenting the lonely voices of those struggling with autoimmune disease, to painting an in-depth portrait of the burden of having to coordinate your own health care, to championing self-care as a tool for disease prevention, we are building bridges across the abyss of slow diagnosis and disappointing treatment.

We took a giant leap towards creating a digitally connected world of personalized care for autoimmune patients in 2016 by bringing this mission to the expansive, imaginative audience of SXSW. Our expert panel, Hacking for Healing, shared solutions for helping chronic disease patients understand their symptoms and guide treatment via new data and wellness services.

However, it remains true today that most of the available digital tools still target the already healthy, while the pool of resources drastically decreases for those who are not quite healthy and not quite sick.

Now, more than ever, is the time to highlight the 50 million autoimmune disease patients who need improved personal care on the global 2018 SXSW stage.

new customized digital tools for optimal health graphic

Our 2018 panel focuses on three innovative companies that have developed new personalized tools for wellness that may also help the chronically ill: Nuritas, Vitagene, and Seed.

I invite you to join us on this journey to bring personalization to healthcare by voting for our 2018 SXSW panel between August 7th and 25th. With your help, we can save millions.

Learn more from my curated collection of scientific autoimmunity resources.

Explore my timeline of progress made since 2014 in reversing the invisible epidemic of autoimmune disease.

 


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

Sitting girl, hand drawing watercolor illustration

When My Illness Demands That I 'Micromanage' My Body

In the six weeks since I’ve sprained my ankle, I’ve become aware of what every muscle and joint in my foot is used during particular movements. Mainly due to the pain I feel in particular areas of my foot when I’m walking at varying speeds, moving up and down stairs, driving, etc. Obviously I have [...]
Female Doctor Meeting With Patient In Exam Room

The Daunting Task of Finding a New Doctor After Moving Away

Having a chronic illness, we rely so much on our medical team. We visit them on a regular basis and they become someone we can talk to about anything. They know our fears, our illnesses, what medications work and what doesn’t. The general doctor or primary doctor works with all your specialists and ties them [...]
leather purse with keychains

Why I Splurge on the Everyday Items I Need for My Disease

For those of us with chronic illnesses, it may seem obvious that pampering is a good thing. After all, being pampered makes us feel special. And with all the pain and other effects we endure from our different illnesses, that is the last thing we feel on a day-to-day basis. So it is a feeling [...]
Young woman looking through window.

Dear August, From a Chronically Ill 21-Year-Old Who Isn't Going to School

Dear August, Here we are again. I nearly forgot about your existence. And then Your arrival looms over me like a dark cloud. When back-to-school commercials start infecting the television And pictures of yellow school busses, and happy healthy children are plastered all over every store. I know that just days after you arrive everyone’s [...]