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On a bad day, Ottawa’s Nicoleta Woinarosky falls apart.
Woinarosky suffers from a rare genetic disease, Ehlers-Danlos Syndrome (EDS), which makes her joints so unstable that her toes, ankles, kneecaps, fingers, wrists, neck and shoulders can easily dislocate. Those with the disease are dangerously flexible.
Woinarosky sleeps in a rigid neck brace, but has to wake up every two hours to exercise her jawbone and limbs to prevent them from coming out of the socket. She exercises in the shower, while brushing her teeth, and sitting at the computer.
“I have to exercise daily to strengthen my muscles to hold my bones in place,” says Woinarosky, 63, who has become a devoted Ehlers-Danlos researcher and advocate since being diagnosed.
The disease primarily affects her connective tissue, which provides strength and support to skin, bones, blood vessels and vital organs. Woinarosky tells people that connective tissue is like the mortar of a brick house.
“My defective tissues cannot properly hold me up,” she says. “So if my muscles relax, my bones come out.”
Wherever she goes, Woinarosky walks purposefully, with her feet low to the ground, as if negotiating an icy sidewalk. Her muscles have to work especially hard, which forces her to rest often. The advanced arthritis in her joints leaves her in constant, sometimes debilitating pain.
“At times, my fingers, thumbs and toes feel like someone is cutting them off,” she says.
Still, Woinarosky does not allow the pain to prevail. She hikes on flat trails with her husband, and devotes huge amounts of time and energy to disease research, and to sharing her lifetime of Ehlers-Danlos knowledge with doctors, families and patients.
“People tell me that I’m a very strong person,” says Woinarosky, who suffers a severe form of the disease.
There are 13 types of Ehlers-Danlos, which can differ vastly from one another. About one in every 5,000 Canadians lives with some form of EDS, a group of inherited disorders often caused by a mutation in one of the genes involved in collagen production.
Related
Collagen is a primary component of connective tissues, such as tendons, ligaments and cartilage.
Since the disorder can affect many parts of the body, people with EDS can present doctors with an odd constellation of symptoms — joint dislocations, chronic pain, tremors, fatigue, bowel, bladder and digestive problems — that make it difficult to pinpoint.
It took Woinarosky three decades to gain a diagnosis.
Born in Eastern Europe behind the Iron Curtain, Woinarosky was extraordinarily flexible as a child, which was an advantage when she was a competitive gymnast. A series of mysterious health problems forced her to abandon the sport at age 11.
Frustrated in her pursuit of higher education, Woinarosky fled her homeland and arrived in Canada as a political refugee in December 1984. She earned a social sciences degree from the University of Ottawa, and went to work as a researcher for the Immigration Department.
All the while, Woinarosky endured some baffling health issues. She suffered irritable bowels, sleeplessness and involuntary muscle contractions. Her ankles and feet would often dislocate on uneven ground. She suffered hard, mystifying falls.
“Before she was diagnosed, we thought she was clumsy,” says her husband, Allan Gordon.
Nicole Woinarosky, 64, gets help from her husband, Allan Gordon, stepping off the pavement near their Ottawa apartment.
Baffled doctors repeatedly offered Woinarosky anti-depressants, but she rejected them and sought better answers.
In the late 1990s, she began to suffer what she thought was a repetitive strain injury to her hands. Daily computer work was agonizing.
Woinarosky went back to university and studied human kinetics to better understand her own body. Her 2007 master’s thesis examined how exercise could alleviate pain, anxiety and depression among those with repetitive strain injuries.
Still, her health continued to decline, and in 2011 she quit her government job in an attempt to escape the mysterious ailment that was destroying her life.
“I was devastated because I wanted to work, but my body couldn’t do it.”
Instead, she volunteered with the Arthritis Society and taught courses in pain management, while also leading exercise classes at a senior’s residence.
It wasn’t until 2012 that she first read about Ehlers-Danlos while doing research for an acquaintance with the disease. She thought it odd that she suffered so many of the same symptoms.
Coincidentally, in December 2012, her neurologist examined an MRI that revealed a serious misalignment in Woinarosky’s cervical spine. He said she likely had Ehlers-Danlos, and advised her to find her own specialist since he didn’t know of any in Canada.
“On the one hand, I thought, ‘Finally, I’m not insane,'” remembers Woinarosky. “Because for almost 30 years, doctors just offered me anti-depressants. On the other hand, I thought, ‘Wow, what a diagnosis.’”
Through online research, Woinarosky discovered that a U.S. neurosurgeon, Dr. Fraser Henderson, was pioneering treatments for EDS. (A former naval officer, Henderson was stationed in Beirut, Lebanon, when the Marine Corps barracks was bombed by terrorists in October 1983; he was decorated for his marathon surgery on injured soldiers.)
After assessing Woinarosky, Henderson performed two operations. The first, in August 2013, fused Woinarosky’s skull to her upper spine to give her head more stability and reduce its dangerous range of motion. The second, in September 2014, freed her spinal cord to move more easily inside her spinal column.
OHIP refused to cover the surgeries, which cost $160,000 US. Woinarosky and her husband sold their home in Champlain Park to help finance the procedures.
The surgeries, she says, have allowed her to regain control of her legs, hands, bowels and bladder, and have improved her breathing and speech, while also reducing her pain, convulsions and tremors.
“I have three important men in my life: the neurologist who diagnosed me, the neurosurgeon who performed two lifesaving surgeries, and my husband who drove me seven times to Maryland,” she says.
Living with Ehlers-Danlos is both a physical and psychological challenge since its manifestations change constantly. There is no cure.
“Anytime, anything can happen,” says Woinarosky, “so you have to enjoy life as much as you can despite the pain.”
aduffy@postmedia.com
查看原文...
Woinarosky suffers from a rare genetic disease, Ehlers-Danlos Syndrome (EDS), which makes her joints so unstable that her toes, ankles, kneecaps, fingers, wrists, neck and shoulders can easily dislocate. Those with the disease are dangerously flexible.
Woinarosky sleeps in a rigid neck brace, but has to wake up every two hours to exercise her jawbone and limbs to prevent them from coming out of the socket. She exercises in the shower, while brushing her teeth, and sitting at the computer.
“I have to exercise daily to strengthen my muscles to hold my bones in place,” says Woinarosky, 63, who has become a devoted Ehlers-Danlos researcher and advocate since being diagnosed.
The disease primarily affects her connective tissue, which provides strength and support to skin, bones, blood vessels and vital organs. Woinarosky tells people that connective tissue is like the mortar of a brick house.
“My defective tissues cannot properly hold me up,” she says. “So if my muscles relax, my bones come out.”
Wherever she goes, Woinarosky walks purposefully, with her feet low to the ground, as if negotiating an icy sidewalk. Her muscles have to work especially hard, which forces her to rest often. The advanced arthritis in her joints leaves her in constant, sometimes debilitating pain.
“At times, my fingers, thumbs and toes feel like someone is cutting them off,” she says.
Still, Woinarosky does not allow the pain to prevail. She hikes on flat trails with her husband, and devotes huge amounts of time and energy to disease research, and to sharing her lifetime of Ehlers-Danlos knowledge with doctors, families and patients.
“People tell me that I’m a very strong person,” says Woinarosky, who suffers a severe form of the disease.
There are 13 types of Ehlers-Danlos, which can differ vastly from one another. About one in every 5,000 Canadians lives with some form of EDS, a group of inherited disorders often caused by a mutation in one of the genes involved in collagen production.
Related
Collagen is a primary component of connective tissues, such as tendons, ligaments and cartilage.
Since the disorder can affect many parts of the body, people with EDS can present doctors with an odd constellation of symptoms — joint dislocations, chronic pain, tremors, fatigue, bowel, bladder and digestive problems — that make it difficult to pinpoint.
It took Woinarosky three decades to gain a diagnosis.
Born in Eastern Europe behind the Iron Curtain, Woinarosky was extraordinarily flexible as a child, which was an advantage when she was a competitive gymnast. A series of mysterious health problems forced her to abandon the sport at age 11.
Frustrated in her pursuit of higher education, Woinarosky fled her homeland and arrived in Canada as a political refugee in December 1984. She earned a social sciences degree from the University of Ottawa, and went to work as a researcher for the Immigration Department.
All the while, Woinarosky endured some baffling health issues. She suffered irritable bowels, sleeplessness and involuntary muscle contractions. Her ankles and feet would often dislocate on uneven ground. She suffered hard, mystifying falls.
“Before she was diagnosed, we thought she was clumsy,” says her husband, Allan Gordon.
Nicole Woinarosky, 64, gets help from her husband, Allan Gordon, stepping off the pavement near their Ottawa apartment.
Baffled doctors repeatedly offered Woinarosky anti-depressants, but she rejected them and sought better answers.
In the late 1990s, she began to suffer what she thought was a repetitive strain injury to her hands. Daily computer work was agonizing.
Woinarosky went back to university and studied human kinetics to better understand her own body. Her 2007 master’s thesis examined how exercise could alleviate pain, anxiety and depression among those with repetitive strain injuries.
Still, her health continued to decline, and in 2011 she quit her government job in an attempt to escape the mysterious ailment that was destroying her life.
“I was devastated because I wanted to work, but my body couldn’t do it.”
Instead, she volunteered with the Arthritis Society and taught courses in pain management, while also leading exercise classes at a senior’s residence.
It wasn’t until 2012 that she first read about Ehlers-Danlos while doing research for an acquaintance with the disease. She thought it odd that she suffered so many of the same symptoms.
Coincidentally, in December 2012, her neurologist examined an MRI that revealed a serious misalignment in Woinarosky’s cervical spine. He said she likely had Ehlers-Danlos, and advised her to find her own specialist since he didn’t know of any in Canada.
“On the one hand, I thought, ‘Finally, I’m not insane,'” remembers Woinarosky. “Because for almost 30 years, doctors just offered me anti-depressants. On the other hand, I thought, ‘Wow, what a diagnosis.’”
Through online research, Woinarosky discovered that a U.S. neurosurgeon, Dr. Fraser Henderson, was pioneering treatments for EDS. (A former naval officer, Henderson was stationed in Beirut, Lebanon, when the Marine Corps barracks was bombed by terrorists in October 1983; he was decorated for his marathon surgery on injured soldiers.)
After assessing Woinarosky, Henderson performed two operations. The first, in August 2013, fused Woinarosky’s skull to her upper spine to give her head more stability and reduce its dangerous range of motion. The second, in September 2014, freed her spinal cord to move more easily inside her spinal column.
OHIP refused to cover the surgeries, which cost $160,000 US. Woinarosky and her husband sold their home in Champlain Park to help finance the procedures.
The surgeries, she says, have allowed her to regain control of her legs, hands, bowels and bladder, and have improved her breathing and speech, while also reducing her pain, convulsions and tremors.
“I have three important men in my life: the neurologist who diagnosed me, the neurosurgeon who performed two lifesaving surgeries, and my husband who drove me seven times to Maryland,” she says.
Living with Ehlers-Danlos is both a physical and psychological challenge since its manifestations change constantly. There is no cure.
“Anytime, anything can happen,” says Woinarosky, “so you have to enjoy life as much as you can despite the pain.”
aduffy@postmedia.com
查看原文...
