South Fayette woman focused on fighting incurable disease
Darcy Tannehill doesn't let any grass grow under her feet.
The South Fayette resident is a full-time faculty member at Robert Morris University, has a rescue dog, is an attentive grandmother to her 5-year-old granddaughter Alaina Sullivan and has amyloidosis — an incurable disease that caused the deaths of former Pittsburgh Mayor Richard Caliguiri and Gov. Robert Casey.
“I needed to make a difference,” explained Tannehill, 59, who raises money to fight her disease.
And she has made a difference. Tannehill is the chairperson of the 2017 Pittsburgh Amyloidosis Research Benefit, a fundraiser she started last year to raise money for the rare disease. This year's event is scheduled for 5:30 to 9:30 p.m. Oct. 27 at Montour Heights Country Club in Moon.
“The mayor died almost 30 years ago,” said Tannehill, who helped raise $50,000 to fight the disease last year.
“We still don't have a treatment of our own. Everything is still experimental. Eighty percent of the people diagnosed are still dying in a year. I needed to make a difference.”
Amyloidosis represents several different types of diseases where an abnormal protein called amyloid is produced. The amyloid protein fibers can attach and deposit into organs, tissues, nerves and other places in the body. This can lead to myriad problems such as organ damage or even organ failure.
In Tannehill's case, she said began noticing different symptoms back in 2005, nearly seven years before she was diagnosed.
It started with intestinal pain. Fifteen minutes after she ate, Tannehill said she would sometimes have severe intestinal pain.
“Often women blame hormones and I wanted to try and deal with it,” she said.
That included restricting her diet and avoiding eating. She also noticed her nails had gotten brittle and her hair texture felt different. Blood work was done and the result showed she had a Vitamin D deficiency.
As time progressed, she had dizzy spells and passed out. An MRI was done and nothing was found. A trip to a gastroenterologist didn't find anything out of the ordinary. In 2010, Tannehill said she began suffering from fatigue.
“My legs felt so heavy, I didn't even know if I could walk across the room,” she said.
Her doctors were baffled. Tannehill was tested for thyroid problems and her hormone levels were also examined. One doctor said she might have an autoimmune disease, but that was ruled out. So were heart issues.
In 2012, Tannehill said she was told she was suffering from early-stage multiple myeloma, a cancer formed by malignant plasma cells. But to be safe, she was sent to Allegheny General Hospital for one more test, an abdominal biopsy. That was when the amyloidosis was discovered, seven years after her symptoms began. Tannehill said she was relieved and worried.
“When I was diagnosed, the thing that kept ringing in my head was that my granddaughter was never going to know me.”
Thanks to being a healthy person who exercised and watched her diet, Tannehill has managed to keep her disease mostly at bay thanks to a regimen of chemotherapy drugs and a positive attitude. She also underwent a stem cell transplant.
There have been some setbacks, however. In 2015, a round of chemotherapy pushed her close to heart failure. But she rallied.
“I don't know why, but I have never cried once over my diagnosis,” she said. “It stinks, but what the heck. I need to take it and turn it into a positive. I want to make a difference and fight as much as I can for a treatment to be found.”
Tickets to the fundraiser are $175 per person, and $1,400 for a table of eight. A 75-bottle wine auction will take place along with a live auction that includes symphony, opera and theater tickets, as well as tickets to Steelers and Penguins games. Other items include golf outings, a Carnegie Museum membership, a Yogi Berra signed baseball card and an autographed Mario Lemieux photo.
For more information, or to buy tickets online, go to amyloidosis.org.
Suzanne Elliott is a Tribune-Review staff writer. She can be reached at firstname.lastname@example.org or 412-871-2346.