In the midst of hardship – hope

Darlene Shaw
Darlene Shaw (Photo courtesy of: Darlene Shaw)

In July 2019, Darlene Shaw woke in the middle of the night – disoriented, confused and surrounded not  only by her two sons, but a team of paramedics.

Told she’d been passed out for five minutes, Darlene was hospitalized with the diagnosis of a seizure, but with her memory back in the days that followed, standard tests showed no signs of anything brain-related. As Darlene had been exhausted prior to the incident, it was assumed the seizure was on a one-off, and a neurologist placed blame on stress and fatigue.

Unfortunately, the event’s repercussions meant that Darlene was not allowed to drive for four months, making her work as an interior designer at her clients’ homes difficult. Worse, the assumption of the seizure being a onetime incident was proven wrong.

The following November, Darlene suffered a second seizure. Looking in the mirror resulted in mounting anxiety when she saw her tongue was bitten and bleeding. Checking her phone only led to more questions, with texts from a person whose name she could not place.

That person was Darlene’s boyfriend.

“It was frightening,” remembers Darlene, “realizing later I had no idea who he was.”

A third seizure in August and a return visit to the hospital led to examinations with no further answers, and seizure medication was prescribed.

As time passed, Darlene’s frustrations mounted. Questions about the attacks remained, and the medication’s side effects hammered her with daily migraines or severe headaches.

“I love my work, I have always eaten healthily and I go to the gym all the time, but the seizures continued to be blamed on stress and exhaustion,” remembers Darlene. “I needed to keep pushing, but nothing of what I was hearing explained anything. I felt so discouraged and vulnerable.”

Being referred to Dr. Esther Bui changed everything.

A life-changing meeting

An esteemed neurologist and epileptologist at UHN’s Epilepsy Clinic at Toronto Western Hospital (TWH), UHN, Dr. Bui oversees a program that is unique and specifically tailored to women’s priorities in the management of epilepsy.

“I could have cried I was so happy,” Darlene says, thinking about her first conversation with Dr. Bui. “She was so warm and kind, telling me she wanted to get to the bottom of my issues and to help me.”

The facts

As an authority on epilepsy, Dr. Bui treats people with a condition that is one of the most common neurological disorders in the world. In Canada alone, an average of 42 people a day learn that they have epilepsy. However, in 50 to 60% of cases, its cause is unknown, and for those who do not receive timely diagnosis, targeted treatments, and ongoing support, it can have severe physical, emotional and social consequences. Although there has been much progress in helping patients manage this disease, there is still no cure.

A plan of action

Putting Darlene at ease, a comprehensive plan was soon in motion. Steps included an examination at a local sleep clinic where Darlene was diagnosed with moderate sleep apnea, to a comprehensive MRI scan at UHN. A bone mineral density test was also ordered – an examination which uses X-rays to measure the amount of minerals in one’s bones.

Through Darlene’s MRI, it was found that she had an imbalance in her hippocampus, that part of the brain that is thought to be the centre of emotion, memory, and the autonomic nervous system. With the issue identified, the challenge was to find out if the imbalance caused the seizure or was the result of the seizure – a challenge that Dr. Bui embraced.  

It wasn’t just the thorough nature of Dr. Bui’s strategy that impressed Darlene, but the physician’s warmth, openness and collaborative approach.

 “No matter your journey, you should not be afraid to reach out for help, and Dr. Bui is proof of that,” says Darlene. “When I told her about the disappointing experience I’d had before, she told me that the whole point of her team’s job was to put their knowledge to good use and help other people.”

Patient-centred results

Since first consulting with Dr. Bui in November 2021, Darlene is happy to report she has yet to have a seizure. Looking ahead, she is optimistic about her future thanks to the ongoing help of Dr. Bui.

“I can’t say enough about my experience,” says Darlene. “We’re still looking for answers, but whatever the case, it’s incredibly reassuring to know somebody’s looking – and cares about finding the cause of my seizures, so further seizures can be prevented.”

For Dr. Bui, it’s why she does what she does in the first place.

“People trust their physicians to not just be the expert in disease but a compassionate, thoughtful, humane guide along this particular part of their journey,” she says. “It’s a true privilege to hear back from patients who reach out after they have been treated, to share how life has continued on – I often can’t believe how lucky I am to have my job.”

Learn more about Dr. Esther Bui

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