When you hear hoofbeats, don’t just think horses, think zebras as well.
Vera Cheng, a Richmond woman diagnosed with a rare disease, is hoping that her fundraising campaign can also raise awareness for the rare disease community.
“I am a social worker and I am facing the very real possibility of life-long disability, and permanent neurological damage,” reads her GoFundMe page.
Cheng was revealed to have “several very large Tarlov cysts” when she began experiencing gradually worsening pain after a car accident several years ago.
According to the Tarlov Cyst Foundation, such cysts are “abnormal sacs filled with cerebrospinal fluid” often found near the base of the spine, and can cause progressively painful nerve pain. Treatment options can include nonsurgical and surgical.
Cheng aims to raise $130,000 through her GoFundMe, which will help fund her flight to seek treatment, get surgery and support her family during her recovery. She’s hoping to get treatment from a U.S. doctor who has “developed and refined a surgical treatment that has shown to improve the lives of his patients.
The reason for seeking treatment outside of Canada, Cheng told the Richmond News, is the lack of awareness and resources for the rare disease in the country.
“(The Tarlov cyst disease is), I would say, quite unknown, and there’s a lot of clinical misimpressions within the medical community about this disease,” she said.
“The treatment options have often been temporary relief, and many people have said that it has caused greater pain. So to me, that’s not really a treatment option, if it’s going to make me worse.”
Since starting the fundraiser, Cheng has had to take a sick leave from her job as her pain and mobility challenges have worsened. She said the decision was difficult as she has devoted her life to serving the community.
“10 minutes of sitting leaves me with pain that make every movement excruciating. In order to feel any sense of relief, I would need to lie down on my side to rest and recover from the pain of sitting,” reads her GoFundMe update.
People with rare diseases often overlooked by the health care system
Cheng also hopes her story, especially her experience with the healthcare system, can help others in the rare diseases community since “there really isn’t a lot of options (for patients) out there.”
“(Patients are) often dismissed or (doctors) say it’s probably something else that’s causing the symptoms,” she explained, adding that it sometimes takes years for people to get a diagnosis.
“I was quite fortunate that I was diagnosed sooner than a lot of people.”
She refers to a common saying among doctors, “when you hear hoofbeats think horses, not zebras,” which suggests that the more common diagnosis is more probable.
“But in the rare diseases community, they say sometimes it is a zebra… This is one of those cases where it isn’t a horse that’s gonna explain why I’m having these symptoms. It actually is a rare disease,” said Cheng.
She added that for people with rare diseases, a big hurdle when seeking treatment is usually financial as they might have to access treatment that is not available within the province or even within the country.
“I really do hope that a story like mine can help others to get the help that they need so that we can have a bit of our life back.”
