Community

Stories

STORIES

people that inspire

We hope you enjoy and find comfort in reading about other’s stories below, and we would love to hear your story.  If you are interested in sharing your pheo para journey, please fill out this form.  Or, you can send us a video of less than five minutes.  Your story may be profiled during our Pheo Para Phridays on social media.  Every Friday, we feature a courageous pheo para trooper’s story.

Disclaimer: Personal stories are shared solely for peer support purposes.  It is not the intention of the Alliance to dispense medical advice or a potential course of treatment. Anyone seeking medical advice should contact their physician. 

Tony

My name is Tony Kipkemboi. I was born and raised in Kenya before moving to the United States for college at 19 years of age. My college was paid for through athletic scholarship (cross country & track.)…

Paul

Looking back, my symptoms started as early as age 10. I lived in a heightened state of anxiety, and every day stresses seemed to be getting gradually more unmanageable. I didn’t know what was normal, so I…

Lauren

Ever since I was six years old, I had complained to my parents that my heart hurt. This was a daily issue, getting sent to get EKG’s constantly and every result came back normal. Doctors refused to…

Jenny Condon

In February 2017, I gave birth to my third child. At the time, I had 3 kids, 4 and under.  Needless to say, it was an exciting, but busy time. Shortly after I had my third child,…

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…

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…