Full of heart

Full of heart

Young woman with rare condition wants to raise awareness

Observer staff reporter

Monday, July 22, 2019

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TWENTY-SIX-YEAR-OLD Abi-Gaye Smythe, in a bid to raise awareness about a rare heart disease known as arrhythmogenic right ventricular dysplasia and to help others who suffer from the condition, is set to meet with Prime Minister Andrew Holness next week.

On July 8 she posted the following tweet with an accompanying photo, mentioning Holness using his Twitter handle: “Dear Andrew Holness, I'm Abi-Gaye Smythe. I have a rare progressive heart disease (number one killer in Jamaica) and I am dependent on this cardiac device. There are others like me who need cardiac care but can't afford it. Can we please meet? Hear my story and suggestions.”

The prime minister replied to her tweet in just over an hour, saying: “Thank you for your message. I have been following your journey and I admire your strength and perseverance.”

He then added that senator and Parliamentary Secretary Robert Morgan would contact her to schedule a meeting. He also thanked her for being an inspiration to those who face health challenges.

Arrhythmogenic right ventricular dysplasia (ARVD) is a type of cardiomyopathy. According to Mayo Clinic, cardiomyopathy is a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body. It can lead to heart failure.

ARVD is a rare type of cardiomyopathy in which the muscle in the lower-right heart chamber (right ventricle) is replaced by scar tissue, which can lead to heart rhythm problems, Mayo Clinic explains.

“My right ventricular wall is thin, heart slightly enlarged — I have two leaking valves and my heart races fast to the point where it can send me into cardiac arrest at any time,” Smythe told the Jamaica Observer in a recent interview.

“I wear an implantable cardioverter defibrillator (a battery) that monitors my every heartbeat and prevents me from going into cardiac arrest,” Smythe added.

The average lifespan of the battery is approximately 10 years. However, Smythe said she had to have hers changed at the five-year mark because it had been malfunctioning.

Although she was born with the disease, the 26-year-old said she was only diagnosed in 2011.

“I was having signs and symptoms [of the condition] since I was seven, but doctors thought I was fine. When I was 11 I went back to the doctor and he thought my heart was fine, and, instead, I was diagnosed with an anxiety disorder.

“My mom died, and it was from the same condition. Through the years my symptoms got worse, so I went to the doctor in 2011 and was told that I had an abnormal heart rhythm.

“I was then referred to the Kingston Public Hospital, then I was referred to the University Hospital of the West Indies. Upon doing a series of tests over several months to a year I was officially diagnosed,” she told the Observer.

Smythe explained that some of the symptoms of ARVD are being easily tired, shortness of breath, dizziness, rapid heartbeats, chest pains, and irregular heartbeat.

She shared that she has to pay keen attention to the activities in which she engages.

“I can't be as active as I used to be. I can't do anything for my heart rate to go above a certain level because I'm at high risk of sudden cardiac death.

“I can't dance like I used to, I can't run; having sex is a risk, having kids is a risk. I can't exercise at a normal pace, and I can't consume certain foods, especially those with caffeine,” she said.

“While still having the battery in I still have to be on daily medication, which helps to regulate my heart rate. And, with the battery, I'm affected by cellphones, loud speakers, drills, security wands, and it can also trigger metal detectors,” the young woman continued.

She said, too, that the cost of medication isn't as expensive as the cost of her regular check-ups, which she said can range from $15,000 to $60,000.

At her meeting with the prime minister, Smythe said she intends to speak about ways in which individuals living with the condition locally can get assistance, as well as other concerns.

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