Ophira Calof spent 15 years of her life perfecting opera, but in 2011, it became difficult to sing.
She was enrolled in an opera performance program at the time, and as months went by, her symptoms got worse.
“I struggled to push through and keep singing for the next year, even though I could barely hold myself upright, and was often unable to speak,” she says. At one point, she started falling if she tried to sing, and once, she ended up falling and hitting her head in 2012.
The 23-year-old Toronto musician was diagnosed with Ehlers-Danlos syndrome (EDS) in April 2015.
“Getting the diagnosis felt like a massive relief,” she tells Global News. “While the seriousness of the condition was alarming for my family and friends to process, I was already dealing with the symptoms that had completely debilitated me, and getting a diagnosis gave me a sense of validation and hope.”
What is it?
EDS, according to the U.S. National Library of Medicine, is a group of disorders that affect connective tissues in the body that supports a person’s skin, bones, blood vessels and other organs and tissues. EDS can result in loose joints, elastic skin or other life-threatening complications.
There are 13 types of the syndrome including classic, arthrochalasia, dermatosparaxis, hypermobility, kyphoscoliosis and vascular. The U.S. National Library of Medicine notes it is difficult to estimate how many people live with the condition, but it could be 1 in 5,000 worldwide. On top of this, there are also several forms of EDS that are rare — a vascular type is estimated to affect one in 250,000 people.
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Calof adds it can cause severe chronic pain, a kind of pain that makes it difficult to focus on anything else. “For others, it’s the instability. Every step feels like you’re a marionette trying to walk, or grasp an object. Most of us also deal with crushing fatigue, where even sitting upright and speaking is exhausting. And there are always new symptoms. It’s like a game of whack a mole, where you address one symptom/complication, and immediately something new pops up.”
Living with the condition
After hitting her heard in 2012, Calof decided to move back from Vancouver to Toronto.
“[I was] completely unable to take care of myself, and I spent the next six months lying in a dark room. At that point, I wasn’t even physically capable of humming, never mind singing, and that remained until I had the two surgeries in August and October of 2015.”
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And although EDS is different for every individual, there is a common feeling of isolation most people experience, she says, because the illness is largely unknown and often misunderstood.
“It’s incredibly difficult, physically, emotionally, and socially, to be dealing with debilitating symptoms, with no explanation and no care, for years on end,” she explains. “With EDS, joints often move in and out, sometimes fully dislocating, and sometimes just slipping,” adding it can happen in the spine and even in the skull.
Finding treatment
While there is no cure of EDS and very little research done, there are several ways to get tested, Healthline reports. Genetic tests, a skin biopsy, and echocardiograms can all detect abnormalities.
Calof went for an an upright MRI in the U.S. (these are currently not offered in Ontario) before she did two neurosurgeries. “The technique for operating on EDS patients is also different than on standard patients, as people with EDS generally experience poor wound healing, and things can slip around easily,” she says.
In the first procedure, she had her C4 and C5 vertebrae fused together, and the second procedure widened the gap base of her skull, allowing cerebral spinal fluid to flow properly.
“Unfortunately, the surgeries weren’t covered by our healthcare system, as they’re currently deemed experimental due to a lack of technology and research, and I had to crowdfund in order to be able to afford them. The procedures were hugely successful for me, and really gave me back my life.”
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Calof got her voice back in 2015, after her second surgery. But today, sticking to her dreams of being a singer is still occasionally difficult. “It’s hard for me to sustain the breath needed to sing opera, but it’s given me the opportunity to explore new genres, and new ways of making music.”
Raising awareness
Although there is little awareness of EDS in general, there are a lot of hopeful things being done, she says. The ILC Chronic Pain and Ehlers Danlos Foundation hosts a conference annually to raise awareness, and EDS Canada focuses on patient advocacy and community support.
Becoming a voice of her own, Calof also launched her own campaign, along with a music video called “Still Standing.”
“It showcases snippets of the people with EDS’s own personal experiences in an artistic way, with the black fabric representing the condition, sometimes wrapped around a specific body part, and sometimes weighing us down, and holding us back,” she says. “In the video, we go from isolation to connection, with the idea of turning our pain to power by finding community. We aren’t cured, and we aren’t necessarily always upright, but we’re still standing, together.”
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And with the help of a physiotherapist to manage her symptoms, today she is working toward a degree in interdisciplinary music studies. And as things are better than they were six years ago, living with EDS is not easy.
“Just in the past few weeks, I’ve been experiencing a massive flare of my symptoms that has made it almost impossible for me to walk, and so far, we haven’t been able to identify a cause or treatment plan to address it,” she says. “Living with EDS is a constant balancing act where the landscape keeps changing.”
For more information on Calof’s campaign, click here.
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