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…
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…
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…
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,…
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…
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…
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….
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…
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,…
OCTOBER 2020: I started feeling some pain when swallowing and visited an ENT doctor who felt as if my left tonsil was not really enlarged but was being pushed forward. She ordered a CT-scan which determined that…
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…
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 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…
“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,…
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.)…
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…
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…
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, 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…
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…
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…
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,…
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…
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…
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…
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…
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…
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…
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…
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