 |
 |
 |
 |
 |
 |
 |
|
|
|
|
It
began with terrible headaches in early 1998. Around April 1998 Florence began
to run a constant, low-grade fever with no origin. Frequent nosebleeds followed.
It has obvious that something quite wrong, but the many tests showed nothing.
We peppered the doctor with questions about a disease that was a total mystery to us. What does PAN mean? What is it doing to her body? How do you treat a PAN patient? How did she get it? What's the life expectancy of a PAN patient?
A week earlier we had brought my mom, Florence Becker, into the hospital in serious condition. Nearly three months of tests and evaluations couldn't adequately explain the symptoms that continued to grow worse. Shortness of breath, terrible headaches, a persistent, low-grade fever and abdominal pains had taken their toll on her. Now she was at the point of collapse.
"I'm sorry. Your mother has a very serious and rare disease called Polyartertis Nodosa."
The doctor's words were still ringing in our heads as we tried to understand the diagnosis. Our family looked at one another in shock. My Mom looked very scared. The doctor appeared deeply concerned.
We peppered the doctor with questions about a disease that was a total mystery to us. What does PAN mean? What is it doing to her body? How do you treat a PAN patient? How did she get it? What's the life expectancy of a PAN patient?
A week earlier we had brought my mom, Florence Becker, into the hospital in serious condition. Nearly three months of tests and evaluations couldn't adequately explain the symptoms that continued to grow worse. Shortness of breath, terrible headaches, a persistent, low-grade fever and abdominal pains had taken their toll on her. Now she was at the point of collapse.
Her kidneys had all but ceased to function. Her blood pressure was unusually and dangerously high. Something was obviously wrong but the doctors couldn't identify the cause. She was quickly placed on dialysis three days a week.
A week later a biopsy on her kidney revealed the underlying illness--Classic Polyarteritis Nodosa. She was placed on an aggressive course of Cytotaxan and Prednisone.
Her doctor told us that in her whole career she had never treated a patient with this disease. It became clear that unlike cancer, PAN was not widely known or understood.
I turned to the Internet assuming that I would be able to learn more about this rare disease.
Some of the information was helpful, although it seemed to range from being too general to being written for physicians. I wanted a single web site that provided links explaining the disease; information on doctors and hospitals that treated it and most importantly, I simply wanted to correspond with someone--anyone who had PAN.
It became increasingly apparent that any such resources didn't exist.
My mom's health quickly deteriorated throughout August. The Catch-22 of treatment was damning. Treating PAN required suppressing the body's immune system that left her open to infection. Unfortunately she contracted such an infection and her ability to fight it was gone.
On September 12, 1998 Florence passed away from complications of PAN.
