Patient Stories

Mary Peebels
I’ve been asked to write about what my life has been like living with these illnesses. I think I first realized I had a continuing illness when I was a teenager. I went through many problems associated...
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Alisa Zaita
My Life as a Caretaker What is it like to be a caretaker? The job started out seventeen years ago, when I gave birth to the first of four daughters. When a child got sick and I...
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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...
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Ciara Santiago
At the age of 13, I began noticing I had horrible sweating. I would sweat right through my shirts. I just assumed it was all a part of puberty. I was 16 when I met my husband...
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Dreistein
My name is Dreistein. I just moved into a very nice, old home that we refurbished on our own around the area of Köln, Germany, in September this year. My husband, Tobias, and I were married in...
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Shin Oikawa
I am Shin Oikawa, President of the Japanese Pheo Para Patient Association, Kasshoku Saiboshu wo Kangaeru-kai. The association was established in 2009 and communication between the USA and Japan was initiated by the joint Japanese/U.S. patient conference...
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Justin Kranz
The enemy within… 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...
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Jorie Wilson-Doherty
On January 17, 2010, my life was forever changed. I was twenty-nine years old and was told that I had a brain tumor as well as another mass in my abdomen. Like most people my age, I...
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Laura Becktel
I grew up in a small Indiana town. My childhood was pretty normal until the age of 10. That’s when something inside me changed. I had high blood pressure, heart palpitations, and episodes of weakness, pounding heart,...
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Troy Henderson
My mother was sick for years when I was a child, and she was constantly told she was a hypochondriac. It wasn’t until we moved to Townsville, Queensland, in 1987 that she was diagnosed as having medullary...
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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...
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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...
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Kenneth Smith
Being given the diagnosis of pheochromocytoma is not something anyone wants to hear. As I look back to June of 2008 when I received this diagnosis, I had no idea how this tumor was affecting my life....
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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...
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Lesley Warden
In 2001 I found out about VHL. I was sent to a hospital in Northern Ireland because I had black things in my eyes. It took my first two doctors two days of looking when all of...
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Cathy Freeman
Growing up with a father who had a rare cancer in the late 60s, early 70’s. I lived a charmed childhood . . . until father’s cancer took over. My grandfather (my father’s father) was Ransom Milsom Sherman,...
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Travis Stanley
“That shouldn’t be there!”, said my cardiologist. March 30, 2012 was the day that my life changed forever. Whether that change was for the better is debatable, but I feel like now that I am one of...
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Pamela James
I am a forty-three year old white female and have been diagnosed with the SDHB mutation that causes malignant pheochromocytoma, or paraganglioma. I was diagnosed in March 2005 and have had over fifteen surgeries. My mother had...
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Tannis Brown
I was first diagnosed with a pheochromocytoma in September 2003 (I was 33 years old at the time). Leading up to the diagnosis, I had some symptoms which were missed by myself, my primary care physician and...
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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...
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Danielle Liard
I was sent to a pain clinic in 2003 due to osteoarthritis in my spine. They decided to give me some facet blocks, which is a set of injections of an anesthetic and cortisone combined into the joint...
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Heather Rothwell
At the age of 17, I was diagnosed with multiple paragangliomas. In January 2008, I had surgery to remove 4 paragangliomas, a large one which invaded my bladder and 3 smaller ones in the pelvic region. After...
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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,...
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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...
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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...
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