If you haven't heard of Dystonia, it wouldn't be a surprise to Allison London.
Actually, until her diagnosis in 2009, London, 32, hadn't heard of it either. But three years later the neurological disease has changed her life forever, forcing her to leave her job as an attorney and making many of the things most take for granted every day nearly impossible.
Dystonia is a movement disorder affecting 500,000 men, women and children across North America. It has a wide variety of visible symptoms, but causes uncontrollable muscle spasms in the body. It can result in anything from awkward posture to severe body curling, vocal chord issues and blindness.
London is currently battling symptoms in her core, back and neck that cause her to slouch and her head to dip. She is about 5'4", but says she never reaches that height while standing. She also has a hard time using a keyboard, moving around and holding objects in her hand as light as a phone.
"I can't tell you the number of stares I get during the day, or the number of cab drivers that either pass me by or make and illegal U-turn to come back and pick me up," said London, who grew up in Purchase but now lives in New York City. "Once I get up it's a full-day workout, it's physically exhausting."
But it isn't necessarily how the disease has changed her life that she wants people to know about. She just wants more to know what Dystonia is.
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"I'm living with something that has changed my life that I had never heard of before," London said. "I have a feeling that there are probably more of us out there."
The fear that Dystonia is under diagnosed and underreported is part of the reason Bonnie Strauss co-founded the Bachmann-Strauss Dystonia & Parkinson Foundation in 1995 after her diagnosis. London now helps with the foundation, planning events and organizing fundraisers to help people understand how serious the disease is and how many people are affected.
The Bachmann-Strauss Dystonia & Parkinson Foundation has given $12 million to fund more than 217 grants around the world to date. It's goal is to support research and technology to fight both diseases while spreading awareness to the general public.
London's story is an example of the problems people face while fighting a little-known disease. After feeling a sharp burning sensation across her torso when she was about 26 years old, she began to notice her head dropping lower in her posture. The pain began to increase and as time passed she eventually couldn't even hold her purse anymore.
After an exhaustive amount of visits to doctors and neurosurgeons, no one could figure out what was wrong with her.
London said one doctor—an expert in the field—even suggested she surgically insert rods into her back to keep it straight. When she was finally diagnosed in 2009, the news her doctor gave her was even more of a shock.
"They said to me, my gosh, your brain so doesn't want you straight," she said. "They said I would have broken those rods."
The medical issues caused by inserting the rods would have been unimaginable, she said, and probably never recommended if enough people knew about the disease.
"It's not that the public hasn't heard of it before," she said. "Doctor's haven't either."
Strauss said an important part of the organization is improving the medical community's awareness of the disease as well as the general public; to keep non and misdiagnosis’ from happening.
But, for whatever reason, it's been a difficult task.
"It's very tough," Strauss said. "Even some neurologists hadn't heard of Dystonia."
Although London's professional career is on hold as she battles the disease—she said she can't walk more than a few blocks at a time from her home—she works with the Bachmann-Strauss Dystonia & Parkinson Foundation almost every day over the phone to do her part.
The foundation now has a driven, motivated and smart woman to help in its mission. After graduating as class president and in the top 10 percent of the Harrison class of 1997, London went on to graduate from Penn University and then Georgetown Law School. She has always had an interest in advocacy, and although this isn't the situation she had hoped for, she is well suited for this field.
"This is certainly not how I was hoping to be on a staff as an advocate, but in a strange twist of fate I'm good at this, this is what I wanted to do," London said.
Part of the message she hopes to deliver is that Dystonia has different symptoms for many people. There are seven different types of Dystonia, each with a different effect on a patient. That, London said, might be part of the reason a disease that effects more people than muscular dystrophy, Huntington's disease and Lou Gehrig's disease combined has flown relatively under the radar.
"If you walked into a room to meet a group of people suffering from Dystonia, one would not think we have the same disease," London explained, noting one person might be blind, another unable to speak and another unable to stand from a wheelchair.
There are some treatment options for Dystonia, but no cure. There is a chance people with very mild cases of the disease aren't even aware they have it and increased medical research can only help narrow the understanding of why some show symptoms later in life while others face issues as children.
To help continue the battle London said she has a wonderful support group in Purchase, where many friends and her grandparents still live. She also said her husband helped raise more than $100,000 for the organization through the New York City Marathon during the last two years.
The effort will continue in Purchase on June 18th with the 20th annual Dystonia & Parkinson Golf Invitational to be held at Century Ridge Golf Club. New York City Mayor Michael Bloomberg and award-winning journalist Paula Zahn are expected to speak at the fundraiser, which will include raffles, golf rounds and an auction.
London hopes this event, and many more like it, will help people understand her fight against Dystonia and the need for others to at least know what it is.