My Journey To Change Medicine

Four years ago, I was laying on the floor too sick to get up. I’d been through some tough things before, but this was the first time I thought I would die. It is also the day I began a journey to change medicine. 

I was a quiet, shy child and always somewhat of a medical mystery. I knew that pure grit got me through more days than I could count. Yet I never gave up on the chance that someday my medical team would reach a solid diagnosis. 

After decades of seeing specialist around the world, a simple Google search led to a discovery that would change my life and the lives of thousands of others. I read an article discussing a relatively new diagnosis that was poorly understood and rarely recognized and for the first time in my life, a diagnosis fit my symptoms perfectly.  I could not contain my excitement when I finally had answers.

It also didn’t take long for my network to take notice. At their request I began sharing what I was learning and doing by founding a Facebook group and speaking at local support groups. Six months later a top chemist reached out to me to learn from my community. Then, twenty-two months later, Facebook Headquarters noticed what I was doing and invited me to attend the Facebook Communities Summit at Facebook headquarters. 

My actions, vision, and grit have inspired a community to come together to have educational discussions about Mast Cell Activation Syndrome (MCAS) to help many people just like me who suffered for decades without answers or a good treatment protocol.

This community has been chosen several times by others to create initiatives to change the way we do medicine, to include how we diagnose patients and how they receive care in our medical system in the USA and around the world.  Then the pandemic hit, and my mission became critically important as it became clear that MCAS was co-morbid with COVID-19.

By early 2020, my community had become the largest MCAS community in the world, and the million plus exchanges this community had in the years before were key in helping medical teams find any treatment protocols to fight COVID-19. It doesn’t end there. There are additional signals that the way we do medicine is changing as it was discussed in a recent article from the Royal College of Physicians. They called for significant changes to managing the care for chronically ill patients including MCAS and COVID-19 long-hauler patients. 

I am neurodiverse, chronically ill, and disabled but I am powerful and just getting started! People say the work I am doing is so meaningful to so many. I hope I can teach everyone that no matter how dire things get, you always have the choice to be powerful, make change, and hope for the future. Yes, you can impact the world.

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