As if it isn't bad enough hearing "you've got cancer," it's that much worse when the doctor tells you it's "extremely rare."
This was the situation Mike Folan of Chicago's Hyde Park found himself in after he got an MRI for what he thought was a pulled thigh muscle that just didn't seem to heal.
Turned out, the "pulled muscle" that Mike, a former McKinsey network administrator turned dock master at Crowley's Yacht Yard, had been going to physical therapy for was actually a rare and aggressive form of non-Hodgkin's lymphoma (NHL) classified as "double hit lymphoma."
While approximately 70,000 people in the U.S. are diagnosed annually with NHL, many physicians fail to do further testing for the rare but very aggressive "double hit" variety that's only been recognized since 2006.
Unlike more common diagnoses, the incidence of rare diseases, such as double hit NHL, isn't well tracked, so no one knows exactly how many annual cases there are. Without, shall we say, effective medical PR, rare diseases are often misdiagnosed or missed altogether.
Because, double hit NHL requires aggressive treatment from the outset, missed diagnoses can have serious repercussions for patients who are under-treated. The limited stats available are grim: over half of double hit patients die within a year or two.
After hearing the double hit diagnosis, Mike and his wife, Jill, a communications consultant, did what most people now do in this type of situation: they Googled it.
We've all gotten caught under the dump truck of "medical" information on the Internet, some of it wildly untrue and much of it out of context. But with a very rare illness, even reputable resources that can educate and support patients are limited or nonexistent. Jill also sought out the gold-standards, like the American Cancer Society, the Leukemia and Lymphoma Society, and the Lymphoma Research Foundation, but she still couldn't find much on Mike's diagnosis. "What little turned up was so bleak and scary that Mike and I decided not to tell friends and family what kind of lymphoma it was," Jill said.
The Folans felt like they were alone, treading water in the middle of the cancer ocean. It was this feeling that would inspire Jill to try to make things better for other patients. But only after she and Mike met an oncologist who shared the same mission.
The Folans knew from the start that Dr. Adam Petrich of Northwestern's Lurie Comprehensive Cancer Center in Chicago was different. One of only a handful of physicians known to be researching and treating double hit lymphoma, Petrich not only encouraged questions and patiently discussed the nuances of the disease, but he made himself fully accessible, even giving the Folans his email address.
Mike spent a full year in treatment at Northwestern, eventually undergoing an autologous stem-cell transplant in 2013. While Jill also spent countless hours in the hospital, she calmed her wandering mind by authoring A Mile of Mayhem, a novel set in a Chicago hospital and featuring doctors, cancer, and vampires -- and doctor-vampires. (Here's more on the book written under Jill's pen name, Jilly Langlan.)
But that's not the creative angle I want to focus on here -- rather, it was when Mike was recovering from the transplant and Petrich asked Jill if she'd be interested in working with him to establish a foundation dedicated to double hit lymphoma. Jill had already become active on boards at Northwestern's Lurie Cancer Center, but this would allow her to directly and positively affect patients who shared Mike's diagnosis.
"The notion of establishing a foundation for a rare disease, especially when it's technically under the purview of existing ones, like the Lymphoma Research Foundation, at first struck me as something that might be superfluous," said Petrich. "But we had to organize an effort to get this disease under better control, and we thought, and continue to think, that this is the best way."
The nonprofit Double Hit Lymphoma Foundation was born, and Jill and Dr. Petrich established their mission: Increase awareness of double hit lymphoma; provide information, tools and connections that make a cancer journey more manageable, with fewer surprises and unknowns; and raise funds for double hit lymphoma research.
They built a website, which won a 2014 Hermes award for web content, and they assembled a board that includes Dr. Chadi Nabhan, Medical Director of the Clinical Outpatient Cancer Center and Associate Professor of Medicine at The University of Chicago, and Rick Sherwood, a healthcare strategy consultant. Fundraising has begun in earnest, with the long-term goals of establishing a registry of affected patients and their caregivers and funding clinical trials that might improve survival times.
"Our appetites for doing a better job at curing this disease are enormous," said Petrich. "But it can be very challenging to raise enough money and awareness to really change the natural course of a bad disease. By the same token, we hope that our foundation can be in the right place at the right time to make precisely that difference."
For now, Jill notes the grassroots ways that the Double Hit Lymphoma Foundation is indeed making a difference. She's connected with patients around the world via email and phone calls, and she's even visited a patient in Wisconsin. The strong bonds she's created have led to routine calls with updates from families. While not all of the updates are good news, Jill feels that part of what the Foundation is achieving is a sense of community. Especially with rare disease, feeling less alone is a big step in a positive direction.
For more information, please visit the Double Hit Lymphoma Foundation, at:tdhlf.org.