Teen figure skater suffers from a rare genetic disorder that she had to transplant when she was only 14 years old

A teenage figure skater needed a heart transplant after she was found to have a genetic condition that turned her heart muscle into adipose tissue.

Joelle Hammann, 15, from Lewiston, Minnesota, was singing in her church choir in April 2017 when she suddenly passed out.

The episode sparked weeks of scans and tests in which the then 13-year-old was diagnosed with arrhythmogenic right ventricular cardiomyopathy (ARVC).

Although Joelle was closely watched for two years and even a defibrillator was used, his heart gradually began to fail, making it difficult to skate for even a minute and a half.

In July 2019, she was admitted to one of the Mayo Clinic’s hospitals, where a donor heart was finally found for her after almost 50 days.

Joelle is now figure skating again – even in competition – and told DailyMail.com that her medical journey taught her not to take a day for granted.

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15-year-old figure skater Joelle Hammann from Lewiston, Minnesota, needs a heart transplant after learning that she has a rare genetic disorder. Pictured: Joelle in March 2020

The medical journey began when Joelle was singing in her church choir in April 2017 when she passed out right after the performance. Pictured: Joelle in the hospital in 2019

Joelle started skating when she was four. Her mother, Holly Jacobs, jokes that her daughter was “naughty” on the ice that she was dragged out of class.

However, when Joelle was seven, she saw her older sister compete on an ice show and wanted to do the same. Jacobs agreed as long as her daughter promised to behave well.

Joelle practiced for one and a half hours three days a week – and four hours one day a week – and completed three to four competitions each year.

“She excelled a bit faster than your average skater in our small community,” said her mother.

“Since then it’s just become his passion. She is very competitive and motivated. ‘

Joelle says that for her, skating is a mixture of hard work and relaxation.

“For me, skating is freedom,” she said.

“It feels like I’m floating when I slide across the ice, and it gives me the opportunity to push myself to do better, to be stronger and still enjoy every moment you get.”

However, on a Sunday in April 2017 when Joelle was 13, things suddenly turned around. She had not felt well a few days earlier, but sang in her church choir that day.

After returning to her bank, she passed out.

After a series of tests, Joelle was diagnosed with arrhythmogenic right ventricular cardiomyopathy (ARVC). ARVC occurs when the proteins that hold heart muscle cells together cause the cells to be lost and replaced by fibrous scar tissue and fat cells. Pictured: Joelle at a competition before her transplant on the left and on the right after her transplant in January 2020

At the time, Joelle was doing four sports: basketball, volleyball, athletics, and figure skating. She should pick one and opt for figure skating. Pictured: Joelle at the hospital has her heart monitored

Joelle’s mother took her to Winona Health, 16 miles away, where clinicians would do an electrocardiogram – which records electrical signals from the heart – and it came back abnormal.

She was then sent to Gunderson in Lacrosse, Wisconsin, where she underwent a range of tests, including MRIs, echocardiograms, and stress tests.

A few days later, Joelle’s family received a call and doctors discovered on the phone that she had arrhythmogenic right ventricular cardiomyopathy, or ARVC.

ARVC is a rare genetic disease in which normal heart muscle is replaced with fatty tissue, which disrupts the heart’s electrical signals and causes irregular rhythms.

Over time, the heart cannot pump as much blood as normal and it becomes weaker, which can lead to heart failure.

The signs include dizziness, fainting, palpitations, swelling of the legs, chest pain, and shortness of breath.

It is estimated to affect one in 5,000 people and is often difficult to spot in young people with mild or no symptoms.

Also, Joelle was told that she would likely need a heart transplant in the future

“It was all shocking – and very good emotionally,” said the teenager.

Jacobs added: ‘It was a breathtaking experience. It certainly wasn’t what I expected from that call.

“I expected it to be pretty simple, a simple process. I certainly didn’t expect a heart transplant … It really felt like the world was popping out from right under my feet. ‘

Because Joelle’s medical situation was too complex for Gunderson, she was referred to the Mayo Clinic.

Eight weeks later she had her first appointment with Dr. Michael Ackerman, a genetic cardiologist at the Mayo Clinic.

At that time Joelle was playing basketball and volleyball and, in addition to figure skating, also took part in athletics.

‘[Dr Ackerman] tries its best to keep children as safe as possible. He said; “You have these four sports. What is your favorite sport because you can only do one?” And I said, “Well then I’d like to do figure skating.”

Ackerman monitored Joelle for the next several months, and in April 2018 she was even surgically implanted with a defibrillator to monitor her heart rhythm and detect irregular heartbeats.

However, her physical health began to deteriorate and she began to suffer from debilitating fatigue.

She took part in her last competition in March 2019.

In April 2018, she was given a defibrillator, but her condition continued to deteriorate. In July 2019, she was told that she needed a heart transplant. Image: Joelle (right) and Dr. Michael Ackerman, a genetic cardiologist at the Mayo Clinic

Joelle spent 48 days on the Mayo Clinic’s Saints Mary campus before a donor heart was found for her. Pictured: Joelle in the hospital

“The program I did was a minute and a half long, and as I skated I found myself getting tired faster and faster,” said Joelle.

‘When I got out [the ice]It was really hard to catch your breath. ‘

Her mother added, “I remember very well sitting alone on a balcony watching her skate and not playing well. But she barely finished her program.

‘We had another performance that was an ice show. Getting her to play for 30 seconds on this show … it was something she was having a hard time putting on her skates for at the time. ‘

In July 2019, Joelle and her mother visited Ackerman after the teen had swelling in her legs and diuretics didn’t help bring it down.

Ackerman said there was no waiting because her heart failed and she needed a transplant.

At the time, Joelle’s heart was twice as big as it should be.

‘She was on her way to death. I mean, there’s just no way to gloss over how bad your genetic ARVC has gotten, ”Ackerman said.

Joelle had a heart transplant on September 8 at the age of 14 and recovered in the hospital for two weeks. Pictured: Joelle after her heart transplant

When her old heart was removed, doctors found it was twice the size of the organ (above).