Falls Church resident Lisa Emrich was diagnosed with multiple sclerosis, an autoimmune disorder that affects the central nervous system, nearly ten years ago. But the first time she experienced what can be one of the more extreme symptoms of the disorder, temporary blindness, was in 2000.
“That bout of optic neuritis was my first major MS attack, or exacerbation,” Emrich said. “And then it took five years after that before I finally did get diagnosed. So it was a long time.”
Diagnosing multiple sclerosis takes as long as it took for Emrich to get diagnosed in some people, sometimes it takes longer and sometimes not as long. And the disorder, which is thought to be caused either by the destruction by the immune system of the myelin sheath that protects nerve cells or the failure of the myelin, presents differently in every person who has it.
The diversity of the experiences people with multiple sclerosis have is one of the things that Emrich, and the rest of the team working on iConquerMS, a national patient-driven research initiative launched by the Accelerated Cure Project for MS, want to harness through the project.
Emrich is the chair of communications for the initiative, which operates as a website that encourages people living with multiple sclerosis to play an active role in research by sharing their health data with researchers and propose areas of research they believe need to be studied.
Before being appointed communications chair for the initiative, Emrich had plenty of practice communicating about her experience with multiple sclerosis and rheumatoid arthritis, which she also has, and communicating with other patients experiencing either disorder. She’s been writing about her experience living with both disorders – including her bout of optic neuritis – on her blog Brass & Ivory: Life with MS and RA, a play on her two musical instruments of choice, since 2007.
“It was awfully scary,” Emrich, who is a professional pianist, horn player and music teacher, said of the time that she went temporarily blind in one eye for two months. It was a busy time for her in the spring of 2000. She had lots of gigs, like playing with the Baltimore Opera and Fairfax Symphony.
“And one morning I woke up and I couldn’t see. I thought ‘Is there vaseline over my glasses.’ It scared me.”
Emrich saw three doctors that day – her eye doctor, a retina specialist and a neuro opthamologist. And by the next day she couldn’t see anything out of one eye.
“It was very dramatic and very frightening and then I had to find people who would drive me places, to take me up to Baltimore for rehearsals, so that first experience was very scary.”
Eventually her eyesight came back and doctors told her that it may or may not ever happen again, which it hasn’t thus far. But she started experiencing other symptoms years later, like fatigue, difficulty walking and losing the ability to use her left arm.
Experiencing symptoms like this can be debilitating for some patients of multiple sclerosis, making it difficult or impossible to work or maintain a career.
There is no cure for the disorder, but there are twelve disease-modifying drugs on the market which can delay the progress of the disease. Still, there are still a lot of unknowns about multiple sclerosis.
The goal of iConquerMS, according Laura Kolaczkowski, who is living with multiple sclerosis and is the lead patient advocate for iConquerMS, is to increase the health data available to researchers with the aim of unlocking the mysteries of multiple sclerosis – find what causes it, explore new therapies and find out which patients respond best to what treatment.
Toward that goal, the advocates are trying to get 20,000 multiple sclerosis patients, about five percent of the multiple sclerosis population in the U.S., to register for the initiative and submit their health data by September.
“We’re looking for 20,000 people with MS to join iConquer MS, to help us gather the data to form big data,” Kolaczkowski said. “We need the big data because every last one of us has got a little piece of the puzzle that all fits together and we don’t know which one of us has that eureka moment in us, but someone out there does, and if we could put all of this together to create big data we would be able to look at the whole big picture of all of us together and start comparing. I get excited to think that we have an answer there some place.”
Robert McBurney is the head of the Accelerated Cure Project for MS, an organization that has been functioning as a prototype for iConquerMS since it was founded in 2001 by Art Mellor, an entrepreneur who was diagnosed with multiple sclerosis in 2000. McBurney said that he was excited to learn about the Patient-Centered Outcomes Research Institute, an independent, non-profit organization authorized by Congress in 2010 that funds research to provide patients, caregivers and clinicians with evidence-based information needed to make better-informed healthcare decisions.
After learning about that institute, which was made possible by the Affordable Care Act, McBurney said that his organization applied for and eventually received funding for what became iConquerMS.
“We spent about nine months working in conjunction with people living with MS to create a patient portal where they could join and contribute their data and be part of a patient-powered community that is accelerating research in the area of multiple sclerosis,” McBurney said. He said that, because the majority of the people on the iConquerMS governing board are living with multiple sclerosis, it is “truly a patient-powered initiative.”
Kolaczkowski is optimistic about the potential of iConquerMS, saying that she thinks that the ability for researchers to harness the power of aggregate data to yield tangible results, like being able to tailor treatments based on biomarkers, is not far off. But regardless of the timeline for this potential to come to fruition – if it even does – Kolaczkowski, McBurney and Emrich see iConquerMS as a tool that can empower people living with multiple sclerosis immediately.
“I think one immediate benefit may be that sense of contributing to a greater good. There’s a value in that,” Emrich said. “Perhaps the easier things to look at, like short of a cure, are the research topics where we can get quicker answers that would help people know what small things they can do that may just improve their ability to function.”