Rare Disease Day
My fullest account of surviving two strokes and EGPA, finding a treatment that gave me my life back, and turning pain into faith, resilience, and advocacy.
To honor Rare Disease Awareness Day, I'd like to share my story and offer insight into what it's like living with rare diseases and invisible disabilities.
Hi, my name is Avery Becker, and I live with several very rare diseases. I was born with Russell-Silver Syndrome and intestinal failure, was diagnosed with autism, and later discovered I had an extremely rare disease called EGPA, which I will discuss further in my story. From a young age, I was in and out of hospitals constantly due to breathing problems, suggesting an underlying condition doctors had yet to diagnose.
When I was three years old, due to severe feeding issues, I was given a central line and placed on TPN (total parenteral nutrition). My parents were told I probably wouldn't live past the age of four. Monitoring blood sugar levels is critical with IV nutrition, but at the time, my doctors weren't checking mine frequently enough. When they finally did, my blood sugar had skyrocketed to over 800, sending me into diabetic ketoacidosis, which led to a stroke.
Doctors weren't sure I would survive, and if I did, they believed I would never walk or talk again. Thankfully, by the grace and miracle of my God, Jesus Christ, I not only survived but also relearned to walk and talk.
However, that was far from the end of my medical journey.
I continued to struggle with severe breathing problems and digestive issues, yet my doctors were unable to pinpoint the cause. Fast forward to age 17, I was finally diagnosed with a life-threatening autoimmune disease called eosinophilic granulomatosis with polyangiitis (EGPA). This condition is driven by eosinophils, a type of white blood cell that typically helps fight allergic reactions. In EGPA, eosinophils accumulate abnormally in the blood and tissues, causing inflammation and damage to multiple organs. The disease explained my lifelong asthma and breathing complications. Eventually, eosinophils began attacking my stomach and intestines, leading to large ulcers—painful, debilitating holes that caused intense nausea. I experienced several life-threatening internal bleeds, and at one point, I even coded.
As my disease progressed, it led to vasculitis, which caused my veins to become severely inflamed, increasing my risk of blood clots. Around the age of 20, I experienced a thrombotic storm—a life-threatening cascade of blood clots. I had two clots in my brain, multiple in my arms, one extending from my neck to my heart, and a pulmonary embolism. Doctors classified this as my second stroke.
During this time, my disease was uncontrolled, and I spent more time in the hospital than out. The unpredictable symptoms, excruciating pain, and constant medical uncertainty became unbearable. I felt like I had exhausted all treatment options, and nothing was working. I reached a point where I decided to stop all medications and sign a DNR (Do Not Resuscitate) order—so that if I coded again, I would not be resuscitated. It was the darkest period of my life.
But thanks be to God, that was not the end of my story.
In 2018, my family and I learned about the Right to Try Act, a law that allows patients with life-threatening illnesses to access investigational treatments when all other options have been exhausted. This law may have saved my life. Since then, I've spent far less time in the hospital, and my disease has remained under significantly better control. Most importantly, I was able to truly experience life again—something I may never have had the chance to do without the Right to Try Act.
For so long, I felt like my illnesses and invisible disabilities defined me. The sacrifices others made to ensure my treatments were successful and the financial burden it placed on my family left me with a deep sense of guilt. I felt like my existence was a detriment rather than a contribution. But what I truly wanted was to be defined by my positive impact on the world, not by my suffering.
A few years later, as my health improved, I finally had the chance to step into a new chapter. I got my first job at Pizzability, which later became Brewability/Pizzability—a pizzeria and brewery with a revolutionary mission: employing adults with disabilities, including intellectual, developmental, and medical disabilities. This job changed my life. It gave me a sense of purpose I had never experienced before. Brewability not only embraces and harnesses skills potentially unknown by the disabled but also fosters an all inclusive, accommodating environment catered toward the community.
Through my work, I discovered that I could channel the anger and frustration I once felt about my illness into motivation, passion, and a desire to help others. I became determined to ensure that my coworkers had the same life-changing experience I did. I also realized that distraction is the best coping mechanism—reducing my pain more than any medication ever had.
So, to answer the question: yes, my life experiences have been vastly different from those of the average person. But I wouldn't change them for the world. Every challenge I've faced has made me stronger, more resilient, and deeply grateful for the life I have.
Rare Disease Awareness Day is not about celebrating the fact that we have rare diseases—it's about acknowledging them and choosing to focus on the strength, resilience, and growth they have given us rather than the suffering they have caused. It's about raising awareness for the unseen battles we fight every day and advocating for understanding and support. It's about transforming pain into resilience, rejection into empowerment, and resentment into pride.
I am incredibly grateful for who I am and for the journey that has shaped me. I know that I am exactly the person God intended me to be, and that alone is worth celebrating.