One year of MCAS remission

This week marks one year of me telling strangers, “I’m not supposed to be here.”

As they try to guess where this unsolicited conversation is going, I clarify, “Oh I don’t mean I should be dead. But I should still be in solitary confinement.”

I beam with the satisfaction of knowing I’ve already won the day, as they consider if I’m a public safety threat. 

Mast cell activation syndrome {MCAS) has never been easy to explain, so describing the freedom and joy of remission is basically impossible.

I try to relate in simple terms, “I couldn’t do stairs for 5 years. I could only eat 15 foods without any spices, not even pepper. I had to spend Christmas and birthdays alone.”

MCAS remission has affected every aspect of my life. My gratitude is endless. For example, I can buy food without reading the ingredients labels, I can meet new people and remember their names, and I can wear new clothes without worrying about losing my skin.

It’s okay if people don’t understand the details, but I desperately want the world to understand three things:

  • MCAS treatment can be life changing  
  • MCAS is likely prevalent
  • Most people don’t have access to MCAS testing and treatment

I want people to get access to help sooner than I was able to, so they can avoid unnecessary suffering and damage to their bodies. 

Thank you for your kind messages in response to my video on social media. I’m glad to hear my work is making a positive impact and inspiring hope. It encourages me to continue to share my story and create resources. 

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