Researching Rare: Darcy Tannehill's AL Amyloidosis Journey
MAY 24, 2018
For somebody in need of a diagnosis, the internet can be a dangerous tool.
However, for Darcy Tannehill, who had already dedicated most of her life to research and education, no potential search result was scary enough to deter her from trying to understand the health issues she was experiencing.
Until her death in April, Tannehill served as the Associate Professor of Education at Robert Morris University in Pittsburgh, PA. Previously, she worked as a manuscript editor and a research journal reviewer. Her undergraduate degree in psychology and sociology and her master’s degree in education are from Duquesne University. Her doctorate in administrative and policy studies - higher education management is from the University of Pittsburgh.
In 2012, the incredibly accomplished Tannehill was diagnosed with light chain—or AL—amyloidosis, but for the six years prior, she had been experiencing an array of symptoms characteristic of the disease’s typical early presentation. It started with gastrointestinal issues that she attributed to food allergies, and continued with differences noticed in her hair and fingernails, and eventually led to her having carpal tunnel syndrome. Her primary care physician (PCP) suggested that she might be vitamin deficient, but no vitamins ever made a difference.
Tannehill turned to the internet.
“That’s just the background that I have,” she said to Rare Disease Report in an interview before her passing. “I do research with my job, and I search for facts. I want to approach [whatever I have] from a factual way.”
At one point, she explained, each of the signs she had found pointed her in the direction of amyloidosis. She remembered, though, that Richard S. Caliguiri, the former mayor of Pittsburgh (her home city) had died from the same disease in 1988 after only 7 months of fighting it. “I can’t have [amyloidosis] because I’m not that sick,” she said. “I don’t feel well, but I am NOT that sick.”
Tannehill’s PCP advised her to see an endocrinologist. Her endocrinologist suggested she see a rheumatologist. After tests run by her rheumatologist showed monoclonal gammopathy of undetermined significance (MGUS) in her blood, she was instructed to see an oncologist, due to the likelihood that the presence of MGUS could mean that she was living with multiple myeloma. After a bone marrow biopsy and more blood tests, it was nearly decided that Tannehill was in the early stages of the deadly cancer.
Because she had done hours and hours of research, though, and been unbelievably detailed when describing her medical history, her oncologist suggested one final test: a biopsy of the fat pad of her abdomen. This was intended to “rule out” an alternate diagnosis.
It was intended to rule out AL amyloidosis.
“Truthfully, she wanted to get the diagnosis,” Tannehill told RDR. “She said she wanted to rule it out, but she wasn’t trying to rule it out. I think she was convinced that she had caught it. She just needed this one determining test to figure it out.”
Tannehill was scheduled to see a surgeon in less than 48 hours, and it took less than four days before she got the call she expected, but had been dreading.
The biopsy came back positive. Her amyloidosis diagnosis was confirmed.
As she recalled, the only thought in her head was “I’m going to be dead within the next few months,” she said, because that’s was what had happened to everyone else that she had ever heard of who previously received the same diagnosis.
Despite her circumstances, Tannehill thrived. She underwent multiple rounds of chemotherapy, was the recipient of successful bone marrow and stem cell transplants, and never experienced any significant organ damage. She continued working, playing the piano, rescuing Shetland sheepdogs, and watching as her only grandchild, Alaina, grew every day, right before her eyes.
Still, regardless of what was her seemingly positive quality of life, she noted the existence of significant treatment gaps for this rare disease. Too many cases of amyloidosis are borrowing therapy methods from the multiple myeloma space.
Living with an uncommon condition like AL amyloidosis isn’t as easy as Tannehill made it seem. In the weeks before her death, she gave a talk at the University of Pittsburgh about what the lifestyle entails. Historical data don’t give patients much of a chance, and looking for hope in previous studies can leave patients expecting the worst. A trio of tips from Tannehill’s presentation should serve as commandments for patients in the rare disease community:
Be exceptionally resilient
Don’t be a victim to your disease
Be an active participant
“You can’t take to your bed and say, ‘I’m too sick to do this.’ You need to be able to fight with everything that you have, and find whatever it is [that makes you want to keep fighting],” Tannehill said about resilience. “For me, it’s my determination to make a difference, and it’s my family. I’m fighting to stay here for them.”
Tannehill believed that, in the life of a rare disease patient, feeling apathetic doesn’t get anybody anywhere. To play the victim is be a disservice to oneself and the potential for recovery. A patient’s willingness to be an active participant in the treatment process is necessary; to know light chain counts and how to read the results of blood tests are not optional. It is simply not enough to be told what to do by doctors and caregivers while sitting idly on the sidelines.
Until her death, Tannehill worked tirelessly to raise awareness and funds for research for the amyloidosis community as an active member of the Board of Directors for the national Amyloidosis Foundation. In 2016, she served as the chair of the first Pittsburgh Amyloidosis Research Benefit – an event so successful, it has become an annual occurrence. The most recent took place in October 2017, and awarded over $1.4 million to young researchers pursuing a cure for amyloidosis. The next is scheduled for October 26, 2018.
“Other people have the same problems [that I have],” Tannehill said. “I see people, every week, dying from this, and I can’t just sit back and watch that happen. I figure that while I’m trying to save my own life, there are a lot of other people who need to be saved, too. If I can have any kind of an impact on that then – to me – something good has come from this disease. Maybe that’s why I have it.”
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