Spring 2019 News
International Pheo Para Alliance Conference
This free conference, June 7-8, in Syracuse, NY is open to patients, families, healthcare providers, and researchers. Leading PPGL experts from across the globe, including Dr. Karel Pacak, from the NIH, will discuss diagnostics, medical treatment, surgical approaches, clinical trials, pediatric management and patient support services. Don't miss this opportunity to learn, share and connect! For those of you who can't join us in person, join us via livestream.
Executive Director Update
Show you are pheo para strong with these awareness bracelets!
Jenny's Story
My name is Jenny and I am 32 years old from Fort Dodge, Iowa. In late 2017, I was diagnosed with a metastatic paraganglioma and underwent surgical resection in December of 2017 at the University of Iowa. Following my surgery, I was found to have the SDHB gene mutation. I sought support and hope through this website and from others’ stories prior to my diagnosis and during my recovery. I wanted to give back to those seeking answers who may feel the same worry, anguish, and solitude I felt prior to my diagnosis and during my recovery. With a condition like this being so rare, we have to lean on each other for support and amity. Below is a little about my story.

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, it was like a light switched on. I began having headaches and increased anxiety. My blood pressure was elevated, but it was felt to be secondary to sleep deprivation, hormone changes, and postpartum changes. I was given a prescription for an antihypertensive which relieved some of my symptoms, and I was able to wean off of this. I returned to work full time and was exclusively nursing my baby. Over the summer, I continued to have headaches, which became a daily occurrence. My symptoms continued to worsen. I had difficulty concentrating, trouble sleeping, and severe muscle aches in my back and neck. At times, it literally felt like the adrenaline was surging – as if I was getting ready to jump out of an airplane or I was going to give a speech in front of 1,000 people. On any given day, it felt like my adrenaline was raging and it wasn’t a rare occurrence that my blood pressure would be dangerously elevated, even on multiple antihypertensives.

I was eventually seen by a local nephrologist who immediately suspected a pheochromocytoma. My urine catecholamines were four times the normal range. I underwent a CT of my abdomen which did not identify a tumor on my adrenal glands. In November, after continued suspicion and uncontrolled blood pressures, I had an MIBG scan which identified an extra-adrenal pheo or paraganglioma on my liver. I took a course of phenoxybenzamine prior to my surgery to prepare my body and in December, 2017 I underwent an almost eight-hour surgery followed by an eight-day hospitalization. During this surgery, lymph nodes from my abdomen were removed and were positive for metastatic paraganlioma. Pathology reports also identified the SDHB gene mutation. I jumped feet-first to the lifelong monitoring, worry, and constant hypervigilant state. Because my children have a 50% chance of inheriting the mutation, I met with a geneticist.

I am in the medical field and, oddly enough, I had been very intuitive about this diagnosis from the beginning. A few months prior to my diagnosis, I was lying in bed telling my husband about this particular kind of tumor. I had told him that this is what it feels like. For those that have experienced it, there is nothing in the world that feels like a pheochromocytoma/paraganglioma. I also told him I felt it was going to be cancerous prior to my surgery before we knew of the pathology reports – I just had that intuition. I return to University of Iowa on a regular basis for scans and urine testing. I am forever a pheo/para trooper and survivor. Since I have written this story, I recently gave birth to my 4 th child in March 2019. My pregnancy was uneventful, and I am grateful for the little and big blessings in my life. I am especially blessed to be writing and sharing with others looking for answers.
Calling All Pheo Para Troopers!
We are building our Pheo Para Trooper army and we need you! Fill out the interest form below to start the conversation about how you can volunteer to help fulfill our mission.