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STORIES

people that inspire

Brittany Zaita

Brittany Zaita, age 17 New York A person who is diagnosed with a rare cancer such as Pheochromocytoma/Paraganglioma faces the issue of becoming extremely dependent on an array of doctors and experts who can give all the…

Attiya Khan

Today is Rare Disease Day. In December 2016, I was diagnosed with pheochromocytoma (pheo). Pheo is a rare tumor that usually develops in cells of an adrenal gland. I want to let others know what this has…

Matthew Capogreco

Most people never forget the first time they were told they had cancer. In April 2001, when I was 25 years old, I had that experience. I was in my office at school and received a call…

Allen Wilson

Looking back to 1995, it becomes more and more clear that I had been suffering from pheo symptoms for more than 12 years without knowing it. Knowing what I know now explains nearly all of the anxiety,…

Justin Kranz

I am a 42 year old Australian male who had two extra adrenal pheochromocytomas removed nine years ago in 2004. It has since been discovered that I have a gene fault in SDHB. As a healthy person…

Vincent Coonen

Hello fellow Troopers, my name is Vincent Coonen and live, with my wife Gunilla and our daughter Sanna, in Almere, the Netherlands. I fought a tough physical battle with paraganglioma which I have won. Mentally there were…

Tisa Perra

never thought I would hear my doctor utter the words, “You have malignant paraganglioma in your liver, and it’s not very good.” I was 31 when I first heard those words. He told me he had never…

Thomas Furlong

About nine years of age, I began to experience frequent vomiting immediately following exercise. Profuse sweating and heart palpitations often accompanied this. Over the course of three years, I frequently went to my pediatrician to determine the…

Erin MacBean

When I was seven years old I imagined myself becoming a great deal of things; from President to doctor, actor to rock star…and, yes, I even dreamed of being a carnival or circus performer…you know one of…

Susan Watson

My story begins in College Station back in 1983 when I was just 22 years old. My co- workers noticed a lump in my neck. Only then did I realize that what I thought was a calcified…

Jeannie Lee

For as long as I can remember I’ve always had a difficult time breathing. As a child I participated in sports, and felt that I needed to train harder…or that is was just hot. These were some…

Kristi Eder

My name is Kristi Eder. In two weeks I will be 45, but I am loving 44 right now. Here I will sit and tell my story. My story starts very normally. I was born, I had…