Donacarney woman turns epilepsy journey into a ‘victorious’ return to the spotlight

For South African-born epilepsy advocate Leanda Talbot, stepping back into the spotlight at 41 has been about much more than pageantry.

Now living in Donacarney, Leanda recently travelled to Blackpool to compete in Miss Swimsuit UK, where she placed in the Top 10 and qualified for the World competition, due to take place in the Dominican Republic.

The achievement marks a return to the world of performance for Leanda, who was an undefeated South African national dance champion more than two decades ago.

But alongside her passion for dance, beauty and entertainment, she is also keen to highlight the realities of living with an invisible condition.

“I just needed something to get out of a rut, to have a voice,” she said of her decision to enter pageantry.

“And it did. It became a victorious journey for me.”

Leanda has been living in Ireland for approximately four and a half years. Her father is Irish and originally from County Meath, while she also has family living here.

She said her move to Ireland followed a difficult period in South Africa, including her father suffering a stroke and her own health challenges.

“I’ve always been very, very close to my dad,” she said.

Having spent much of her life involved in beauty, entertainment and dance, Leanda said she found herself looking for a new direction after moving countries.

“I was very busy in South Africa with projects, dresses, entertainment and that kind of thing,” she said.

“But then I just thought, ‘I need something to get out of this rut, to have a voice.’”

Leanda was diagnosed with epilepsy at the age of 12. She said the condition had a significant impact on her childhood, particularly because of the lack of understanding surrounding it.

“I was dealing with a lot of bullying because children didn’t understand what was going on. They thought I was contagious.”

The bullying became so difficult that her mother decided to homeschool her.

At 17, while studying drama through Trinity College London, Leanda experienced her first grand mal seizure.

“I remember waking up in a lift and not knowing what was going on,” she said. “I was thinking, ‘What’s going on? Where am I?’”

Leanda had hoped that she might eventually grow out of epilepsy, but she continues to live with the condition and experiences different types of seizures.

She said epilepsy has also brought an awareness of how precious life is.

“At any moment, at any time, I can wake up out of a seizure and think, ‘Where am I? What’s going on?’” she said.

“And then I come right again. I’ve just relived the whole experience, and I’m alive. I’m just grateful that I’m alive.”

One of her most recent seizures happened while she was in the bath, when she nearly drowned.

She was alone at the time, but her dog began behaving unusually, alerting her aunt, who became concerned and eventually found her.

“I was physically okay, but I could have drowned,” Leanda said.

“If I had just slipped over onto my face, I would be dead.”

She said she is receiving treatment and feels well cared for, adding that she has developed PTSD linked to her experiences with epilepsy, including falls.

“I don’t have to hide the fact that I have epilepsy,” she said. “It has given me a chance to express myself.”

Leanda’s interest in raising awareness of invisible illnesses began years before her return to pageantry.

In South Africa, she founded the Crystal Princess project, which initially grew from princess-themed parties and entertainment events.

The project involved entertainers, make-up artists and ballgowns, but also developed into charitable work. Leanda spoke about involvement with initiatives including Cupcakes for Cancer and Reach for a Dream, where children with serious illnesses were given the opportunity to meet their favourite princesses.

In 2018, she organised an event focusing on people living with invisible illnesses.

She said many of those who became involved looked well on the outside but were living with conditions including depression and fibromyalgia.

“A lot of them were suffering from depression, fibromyalgia and all sorts of things,” she said.

“They just felt they needed some purpose.”

For Leanda, the project was never simply about beauty or appearance.

“It’s about beauty for purpose,” she said.

“It’s about going out there and helping other people understand that even though you may look like you’re absolutely fine, everyone has struggles.”

She said the project was not necessarily intended to be a pageant.

“It’s not about wearing the crown,” she explained. “It’s more about being the crown.”

Leanda’s own entry into pageantry came about naturally, she said, after she began looking for new opportunities and ways to express herself.

She initially entered to make friends and become involved in something different, but her participation eventually brought her to the UK competition.

When she was placed in the Top 10 at Miss Swimsuit UK, she said she was surprised to discover that she had also qualified for the World competition.

“I was completely like, ‘What is happening? What is going on?’” I thought the crown was the main thing. Then they told me I had qualified for the world competition, and I thought, ‘This is insane.’”

The competition featured women across a broad age range, and Leanda said she was conscious of the importance of taking part at 41.

For her, the experience has reinforced the message that women should not feel they have to step away from their ambitions as they get older.

“Love your body and embrace your body,” she said.

“When you’re in your 20s, you might worry about a small freckle or something you don’t like. Then you get to 40 and you start worrying about different things.

“But your body is brilliant. It works.”

She said the same message applied to people living with health conditions.

“You can still live a very wonderful life with epilepsy, as long as you don’t allow it to control you,” she said.

One phrase, in particular, has stayed with her:

“Don’t worry about the fall. Worry about getting back up again.”

Leanda’s epilepsy journey has also included becoming a mother, something she had once been told might be unlikely.

“The doctors told me the possibility of me having a child with epilepsy was very slim,” she said.

Her daughter was born perfectly healthy in December 2009 — a “beautiful miracle” and a Christmas gift.

However, Leanda said the birth could have had a very different outcome after a knot was discovered in the umbilical cord.

She underwent a Caesarean section and believes the decision helped save both their lives.

“If it was nine hours later, it would have been tragic, as we both could have died.If I had a natural birth, either I would have died or she would have died. I know it sounds a bit bizarre, but the Caesarean or epilepsy is what saved us both.”

Leanda had hoped to travel to the World competition in the Dominican Republic, but said she has had to postpone the opportunity after two seasons of competition and the need to rest because of her health.

She said organisers had indicated that she could be given another opportunity to compete.

Leanda’s next ambition is to establish herself as a Pilates instructor. She has already found a venue and is working on arranging insurance before beginning classes.

She said the classes would offer a more flexible way to continue working in an area she enjoys.

“I don’t want to be a victim. I want to be victorious in everything.”

Leanda hopes to continue building her life in Ireland, where she has her mother and brother, as well as her father’s Irish connections.

She said she is grateful for the opportunities she has found here and wants to continue using her experiences to encourage others.

“I don’t want to allow my health to stop me. You can still have a wonderful life.”