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Patient Stories

STORIES

people who inspire

We hope you enjoy and find comfort in reading about other patient 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. 

Jazmyn’s Story

Special thanks to Jazmyn and her mom for sharing their SDHB paraganglioma journey, and to INCA for creating this video as part of their broader effort to raise awareness about neuroendocrine cancer.

Saif’s Story

Throughout this journey, I realized that the doctors I encountered didn’t have much experience dealing with my condition, which added to the challenges I faced. My life took a complete 180-degree turn since then. My goals and…

Olivia

This is Olivia, my fearless 7 year old daughter. Our happy, sweet, gymnast full of life. In January of this year I brought her to our local children’s emergency room with the fear she was having appendicitis-…

Emma

The same week I started rehearsals at Cirque du Soleil to relaunch our show ‘Crystal’ post pandemic, I was diagnosed with a vagal paraganglioma on the right side of my neck. Due to its location and nerves…

Alyssa

We got the radiology results sitting on the couch in our family room. I think that sometimes online medical charts can be both a blessing and a curse. They definitely simplify our lives as patients, but sometimes…

Joe

On August 1st 2022 I was diagnosed with a pheochromocytoma on my right adrenal gland. I am a 55 year-old male living in Queensland, Australia. My pheo was quite active and found by pure luck. I went…

Dani

My journey with my Paraganglioma started near the end of 2021. I noticed I had an increased difficulty hearing out of my left ear. At times it felt there was something crawling around my inner ear, and…

Rod

Well, my story starts by an accident (literally). I fell off a roof and ended up having an x-ray, where a keen-eyed consultant noticed something other than broken bones during a CT scan. A few days later,…

Jill

My name is Jill. I’m not sure when I my symptoms first started but I know that I have had high blood pressure and a feeling of flushing for a very long time. I also had an…

Elise

Growing up I had multiple family members with rare diseases. My grandmother died from heart failure in her fifties after her heart attacks were misdiagnosed as anxiety. I was diagnosed with dysautonomia in middle school but my…

Tonya

It started out as a normal day, but as I was getting ready for work, I felt a tremendous pressure on my chest. I thought I was having a heart attack so I headed to the hospital….

Kristin

In early September of ’18, I was diagnosed with appendix cancer after an appendectomy. After going back in the hospital a few weeks later removing 13” of colon and stripping out lymph nodes, I spent a couple…

Justin

My journey began when I was 14 years old. I had a minor episode that started as heart palpitations and a slight headache; it felt very foreign to me. I began having these episodes every few months,…

Tanisha

My pheochromocytoma journey became in the late year of 2008. I didn’t have symptoms but a light fainting episode. I went to the hospital, received a cat scan. Upon checking the cat scan a mass on my…

Saundra

On September 5, 2019 I went into a dental clinic for a scheduled procedure to finally get dental implants. Yeah me. I conquered my fear. Because of my fear of dental procedures, I was given Valium to…

Sierra’s Story

Sierra’s story begin in Febuary 2016. She was 8 years old. Out of nowhere she had no appetite, wasn’t drinking and lost about 20 lbs. Over a 6 month span, she was fussing horribly about right side…

Kyle & Kylee

“You have a softball sized tumor in your abdomen.” This was the last thing on earth we thought we would hear while we were sitting in a dim ER room on a July night. The morning prior,…

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…

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.)…

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…

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…

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…

Vincent Coonen

Hello to all, my name is Vincent Coonen and live, with my wife and our daughter, in Almere, the Netherlands. In 2013 my story was posted on the Pheo Para Troopers website (merged with the Pheo Para…

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…