Pheochromocytoma
We will slowly become less rare, and not have to suffer so long - PheoFabulous
image by: Phaeo Para Support UK
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She didn’t have any urgent medical problems, the woman told Dr. Lori Bigi. She was there because she had moved to Pittsburgh and needed a primary-care doctor.
Bigi, an internist at the University of Pittsburgh Medical Center, quickly eyed her new patient. She was 31 and petite, just over five feet tall and barely 100 pounds. And she looked just as she described herself, pretty healthy. Doctors often rely on patients’ sense of their well-being, especially when their assessment matches their appearance. But as Dr. Bigi was reminded that day, patients aren’t always right.
The patient did say that she had seen her old doctor for awful headaches she got occasionally. They felt like…
Resources
A new chapter: Pheo vs AI vs Fabulous
So now I am constantly fighting with this struggle of staying alive, either overdosing on adrenaline or dying without any at all.
My very first pheo
This will be my first encounter with pheochromocytoma, the first time I will have ever heard the term, the first time someone will finally put a name to my suffering… but little did I know, it won’t be the last time I’d heard about it, this will be my diagnosis, this will be the moment my life changed forever.
Mysterious Psychosis
The fuzzy picture on the monitor shifted as the tech tried to get a good view of the kidney. “Will you look at that?” the tech exclaimed. The right kidney he pointed at looked normal, but the adrenal gland on top of it was hugely enlarged.
The sh*t nobody actually says
Living with any illness, most of us rely on our positivity and ‘strength’, it’s all we see hear and talk about. We are human however, and not without some cynicism, sarcastic thoughts, and realist views.
What is pheochromocytoma?!?
Before I begin to share my battle with pheochromocytoma.. you have to know what this crazy disease is! Keep reading to understand what it is to be a ‘zebra’.
She Had Never Suffered From Anxiety. Was She Having Her First Panic Attack?
These tumors are rare — on the order of three to eight per million. A patient with a pheochromocytoma will usually have high blood pressure, as well as episodes of headaches, sweating and a racing heart — all of which she had. Of course, these symptoms are far more common than the tumor, and most people with episodes like this do not have a pheochromocytoma. But some do.
Phaeo Para Support UK
The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on adrenal gland tumours (phaeochromocytomas), and inherited phaeochromocytoma and paraganglioma syndromes (PPGLs).
Pheochromocytoma Support Board
Support board for those with Pheochromocytoma and related adrenal tumors, including Multiple Endocrine Neoplasia, MEN, VHL
PheoPara Alliance
To fund research on Pheochromocytoma and Paraganglioma diseases and support a greater understanding through outreach and educational activities worldwide.
Dr. Pheo's blog
To discuss diagnosis and treatment of pheochromocytoma.
Pheo vs Fabulous
A first hand look at my fight & impact with metastatic pheochromocytoma cancer… meanwhile staying my fabulous self!
NET Research Foundation
Pheochromocytoma is a tricky disease to diagnose.
NeuroEndocrine Cancer Australia
Pheochromocytomas (pheos) and paragangliomas (paras) are rare neuroendocrine tumours which arise from chromaffin cells found mainly in the adrenal glands, and the paraganglia of the sympathetic and parasympathic nervous system.
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