My Story

My name is Courtney and I live with a number of chronic rare diseases. I am grateful to share my story with you.  I am blessed to have a loving husband, an amazing 9 year old son, a 1 year old Maltese and an incredibly supportive care team and a deep network of family and friends.  

I was born into a long line of rare disease warriors.  I myself spent decades dealing with a variety of medical problems without truly knowing what I had. Finally, when I was 6 months pregnant, down to eating only three foods, and weighing 90 pounds, I was diagnosed with Mast Cell Activation Syndrome (MCAS).  It was September 11, 2013 and in an instant, my entire life made sense.  My pregnancy worsened my mast cell disease and for the last 9 years I have been working endlessly to heal myself. 

MCAS is a disorder of the immune system involving a type of blood cell, the mast cell. When mast cells activate in a person with the disorder it causes allergic symptoms. Many different triggers can activate my mast cells including foods, perfumes, insect stings, pollen, cleaning products, the sun, intense heat, cold, my own hormones and stress.  Each day is a balancing act of trying to avoid a reaction through different medications and staying away from triggers. 

In 2016, my beloved mother passed away from complications from her rare diseases.  It was a rapid six-week decline and unfortunately science had not caught up in time to save her. As I grieved, I knew that I had to be a part of the fight for a cure, for a better future for myself and my child, who also lives with these diseases.  

I found my way to volunteer with a number of the rare disease non-profits that work with the diseases I live with. In doing so, I am a part of ensuring new treatments are realized, patient voices are heard, and that no one else will lose their loved one because we did not know. 

This blog is a way for me to further those efforts but in truth, is pushing me far out of my comfort zone. I am still growing comfortable with putting myself out fully into the world with photos and other identifying names, but I know in time I will become more settled into this new space. I strongly believe in the power we have in speaking our truth which has motivated me to do this.

My journey is far from over, so I hope you will join me as I live my rare version of normal in hopes that my own experiences can help other rare disease patients, while also bringing needed awareness to the rare disease community- our struggles, our strength, and our hope for a better future.