We are all probably at least a little guilty of ignoring our health – it’s all too easy to take good health for granted, unless you’re Nyssa Berryman. Born with Exompholis (her internal organs were on the outside of her body), doctors told Nyssa’s parents their newborn baby girl wouldn’t live through her first night, but live she did, and she hasn’t stopped for a minute, as Alli Grant discovered.

There’s nothing more fragile, and frankly more important, than our health. Although many of us take our good health and wellbeing for granted, and it’s not until our physical condition deteriorates, through an accident or illness, that we realise how lucky we were in the first place.
And while I have been fairly blessed in the health department, I’ve had my fair share of challenges, and, ironically, I am writing this story while sitting in the waiting room of a diagnostic centre. It’s certainly a wakeup call.
Buddha once said, “Every human being is the author of his own health or disease”.
I certainly agree that many of us can be a little complacent when it comes to preventative measures to preserve our health, but sadly all too many are born with an ailment that impedes their health and wellbeing, or have some kind of disease thrust upon them. These people have no choice but to live with their affliction.
One such person is local PR guru, Nyssa Berryman. Nyssa’s outgoing and effervescent personality belies her lifelong health problems. To look at this gorgeous 31-year-old, you have no idea that she has looked death in the face numerous times and has undergone some 13 operations.
Nyssa is a student of the school of ‘mind over matter’. She has never let her illness and health concerns beat her. If anything, her somewhat shaky start to life has given her an extra boost of determination and gusto.
By rights, New Zealand-born Nyssa should not be here. Doctors told her parents it was unlikely she would last the night; the very first night of her 31-year-existence.
Nyssa was born with Exompholis – all of her internal organs (from her abdomen) were on the outside of her body. Her parents had no idea of her affliction as the technology we enjoy today was pretty much nonexistent in the 70s.
“There was an epidemic of Exompholis in Wellington – there were three of us which is categorised as an epidemic. I was the third born.”
So Exompholis isn’t genetic?
“It’s definitely not genetic. It really could have been caused by anything, but there was a lot of finger pointing at a pesticide, 245T, but that’s really hearsay.”
Having given birth to my first child last year, I can only imagine the terror of seeing your beautiful newborn baby in such an unspeakable state.
“It really was an horrific thing for a family to go through. We certainly have been through a hell of a lot together. My parents have been amazing – they haven’t ever blamed anyone. They have always encouraged me to do anything. I guess it shows that nothing can hold me back.”
Having recently dealt with another two cases of Exompholis, doctors knew their priority was getting Nyssa’s organs back into her body, and fast.
“The bowel expands when exposed to air so they knew they had to put everything back in really quickly; it was all literally shoved back in, then they zipped me up. They told Mum to brace herself as I wouldn’t make it through the night. They lived minute by minute through that first night – breath by breath. And then we worked to reach other milestones.
“At day three my parents realised they had better name me. I guess I was born different so they gave me a different name, Nyssa, which means ‘starting point’ in Greek. Nyssa certainly is a different name. From the word go they knew I’d be different.”
And what a starting point it was. Having made it through the night and beyond, it became apparent Nyssa was a determined little girl.
“I went on to have four other abdomen surgeries. When I was about four I had to have my stomach muscles joined.”
In fact, as a result of having her innards “literally shoved back in”, her kidneys and liver were actually put back in the wrong place, something that only came to light earlier this year.
To add insult to injury, Nyssa was also born with a hole in her heart, and at the age of five she had to undergo open heart surgery and a bypass.
“I started school in hospital. I remember my class coming to see me in hospital. I was in hospital for my birthday but my doctor said my parents could bring my present, a bike, into the hospital. One day they came in and I wasn’t in my bed – I was down the corridor on my bike doing wheelies.”
Nyssa has been plagued by ill health, not always connected to the Exompholis.
“If someone is going to get sick, it’s me. I’ve had my adenoids out and appendicitis. I’ve been told that I can’t have kids, but things change. Looking back now I think it all played a part – my immune system was out of whack.”
Back to Nyssa’s story; at the age of 10, her family moved to Melbourne.
“We loved Melbourne, it was really good family time and we made some amazing friends, but it was always dad’s dream to move back here. His Dad built one of the first beach houses in Marcoola back in 1973,” Nyssa recalls.
Just before their planned move to the Coast, in typical Nyssa style, her health once again let her down and she found herself in hospital for another surgery, thanks to a blocked and twisted bowel – it had tied itself into a complete knot.
“I’ll never forget the pain – it was horrific. I spent my 13th birthday in hospital. I ended up in emergency surgery which was supposed to last six hours but took 12 hours.”
Incidentally, Nyssa suffered from a twisted bowel again in 2007 so she had to relive this hideous pain, and the surgery took a greater toll on her adult body.
“As a kid you bounce back more quickly. As an adult it has taken me years to get back on track. 2007 floored me. Not only was I sick but I was really burnt out at work. My body went into shut down.”
Unfortunately, these surgeries aren’t the only tremendous challenges her body has had to endure.
“I was 15 and we had sold my horse so we went out to wash and float the horse to its new owners. I was doubling bareback with a friend and he [the horse] did a small buck, which is fine, but the momentum threw both of us off and my friend landed on my chest.”
Nyssa broke several ribs and suffered from a deflated lung and a broken nose. Her father had to perform CPR on his daughter while waiting for the ambulance; something Nyssa only recently discovered.
“I’m supposed to be here; there were two ambulances in the area and one had a cardiac surgeon onboard. I had lost two thirds of my body weight in blood. I remember them cutting my clothes off, but after that I was unconscious for a week in the Royal Brisbane before being transferred to Nambour.”
Poor Nyssa can’t take a trick. How she has remained positive through all this tragedy and illness is beyond me. Most surprisingly, despite the numerous painful beatings her body has endured, she excelled at sport.
“I was always naturally good at sport. Playing tennis, netball, athletics ... I raced against Lauren Hewitt [Olympian] and trained with Tamsyn Lewis [Olympian] at Debbie Flyntoff-King training camps.”
Nyssa was most fond of athletics and netball, making representative teams in both sports and being ‘talent scouted’ for an elite athletics program shortly before her family’s move to the Coast.
“I never really got back into it. I just have to accept that my health has created some limitations.”
Part of the way through a combined degree (a Bachelor of Arts / Bachelor of Business majoring in marketing and international tourism), Nyssa was tempted to travel by her sister, Melanie, who was living in London.
“I didn’t know if I wanted to keep studying. I knew there had to be more. I spent some time in Japan with friends then met my sister in London and starting working at an expensive, posh health club. They liked to employ Aussies, Kiwis and South Africans as we didn’t really know who the famous patrons were.”
Deciding it was time for her next adventure, Nyssa tendered her resignation. Fate intervened – one club member with whom Nyssa had become particularly friendly with came in one day to ask if she knew any Australian nannies. Nyssa, who had previously worked in child care, volunteered for the role.
Little did Nyssa know that she had just accepted a role with one of Hollywood’s most successful actresses. That beautiful woman was Kate Beckinsale from Pearl Harbor and Serendipity fame, whose partner was actor Michael Sheen.
“I really am not a big movie buff so I had no idea. She told me at the interview she was an actress and that I’d have to travel. I feel so stupid now – I asked her who would pay for the travel! I realise how naive I was.”
This twist of fate heralded a new chapter in Nyssa’s life; a new starting point that featured international junkets, media trips, movie premiers, glamorous wardrobes and a gorgeous little girl called Lily-Mo.
“When I started it was full on. I flew to LA with them [Kate, Mike and Lily-Mo] and my new life began. I was prepped about Pearl Harbor as it was such a blockbuster. Here I was thrust into a world of five star hotels, first class flights and drivers.
“It actually worked really well as I was never star struck. I took my job of looking after Lily-Mo seriously. She was a really cool, cute little kid. I was always with Kate or Mike, wherever they went.
 “Kate was awesome, amazing even. She was 27 and was a young mum with the whole world looking at her. Everyone was fabulous and it was such an exciting time.”
And by everyone, Nyssa means everyone. She got to meet a lot of A-list stars while working with Kate, including Ben Affleck, Josh Hartnett and Uma Thurman – she even lunched at Quentin Tarantino’s house and flew to Hawaii for the premiere of Pearl Harbor.
Although enjoying her high-flying life, after 10 months Nyssa began to feel like she was living someone else’s life, not her own. With Kate and Mike planning a move to Los Angeles, Nyssa decided to hand in her notice and recommence her travels.
“It really was a bitter-sweet decision to make – it could have gone either way,” she recalls, “but I had my UK ancestry visa and I wanted to make the most of it and travel.”
Cupid also played a part in Nyssa’s decision as she had just met her future husband, Regan, a rugby player. The couple clicked instantly and became inseparable, exploring the world together around their working commitments. All up, Regan and Nyssa, who married in 2006, have explored some 52 counties together.
It was about this time Nyssa realised it was time to sort out her future – what career path should she follow?
“I met so many amazing people while working for Kate – her makeup artist, stylist, agent, manager and publicist. I thought being a publicist was the most amazing job in the world. I knew that was what I wanted to do so I started studying for a Diploma in marketing, advertising and PR, and I did some temp work.
“I always landed such great jobs, working for JP Morgan Chase, Citigroup and CitiSolutions. We launched CitiSolutions, a large insurance company, at the House of Lords, which was a wonderful experience in itself. I was just rolling with it at the time but now I appreciate it all and I don’t take the experiences for granted.”
Regan decided not to renew his rugby contract and so their next adventure began – the couple accepted roles with a rugby club in St Vincent Grenadines in the Caribbean; Regan as coach and development officer and Nyssa as the club’s PR manager.
“We had some awesome experiences – taking the kids [players] to the UK to play – some of them had never even been on a plane. It was a really tough experience though. St Vincent really is a third world country. We were broken into five times.”
After six months it was back to the UK for some speedy studying, a bit more work and a three month European vacation, before heading to the Sunshine Coast to settle down after almost four years abroad and one hell of an adventure.
With substantial global experience under her PR belt, Nyssa was destined to secure her dream job in the media on the Coast. Although applying for a sales rep job with WIN Television, she landed the position of promotions for the Sunshine Coast. In no time at all she was appointed state publicity and promotions manager for the network.
“I was really on the hamster wheel – it was full on. I worked so damn hard, I guess I burnt out. But I absolutely loved what I did – the community work, sponsorship, events … when I resigned from the network I cried on the phone to my boss for an hour, but I knew it was time to move on.”
This brings us back to 2007, a challenging year. Not only was Nyssa burnt out from the corporate world but her health deteriorated and she ended up with another twisted bowel and more surgery.
Nyssa had already started a little agency called The Buzz PR on the side, dabbling in media relations for a few friends. She realised this was her calling – she decided to work for herself so she could get her health back on track.
“We officially launched and we hit the ground running. It was crazy! But I love being my own boss. Sometimes it’s long hours but I’m super happy.”
And why wouldn’t she be? With a swag of local, national and international clients across industries such as health, travel, wholesale, sport, law, real estate and entertainment / the media, The Buzz PR is testament to Nyssa’s strong will and resolve.
Nyssa describes herself as “super social, energetic, confident and determined, but still quite sensitive” and while you would forgive her for being at least a little bitter about the trials she has had to overcome, she is anything but.
Her health is on the up and up, thanks to a new doctor who has changed Nyssa’s life. Surprisingly, it is at this point that Nyssa tears up. She didn’t cry when talking about her past, a past challenging enough to make the toughest of us break down in reflection, but when she talks about her future.
I think the tears probably represent relief – relief that she is finally free from pain, relief that she has found someone to help prepare her body for motherhood and relief that the worst may just be behind her.
“A client referred me to a new doctor as since my last surgery I just didn’t feel right. He is the most incredible doctor. He worked out my diaphragm is back to front and that my kidneys and liver are in the wrong place. I also had a stomach ulcer. He discovered so many more things – I had an intestinal worm and two parasites and I had absolutely no iodine in my system. I am also allergic to so many foods.
 “I now realise that for most of my life I had a painful stomach and I just learnt to live with it. I can’t remember ever sleeping through the night without pain, but I can now. I feel so much better – it’s a different energy. I have more patience. It wasn’t just one thing; it has been a million little things adding up to this nightmare of a body – my insides.”
A body that, if all goes to plan, may finally bring her something joyous – a baby.
She adds, “I just don’t want to have another operation. Actually, I’m probably the only woman alive who actually wants a natural childbirth!”
Nyssa shows me her scars. Her décolletage, chest and stomach are scattered with wound lines – it’s almost a pictorial journey of her life, each scar representing a surgery, illness or accident.
“Oh and I don’t have a belly button,” she quickly points out. “That’s my party trick, although once a doctor offered to build me one.” We both laugh at the thought.
“It’s funny. When I talk about myself and my health, my jobs and my travels, I feel like I am talking about someone else.”
I ask her if she believes in karma … does Nyssa think she has been blessed with so many amazing experiences to balance out the hell her body has had to tolerate?
“Maybe. But life is what you make of it. Mum and Dad never wrapped me in cotton wool. I have been a survivor since birth.
“Being sick has given me real empathy. If someone has a painful belly, I can feel it. I get it. I’m really a huge contradiction. I have empathy for others but when I’m sick I think I should just suck it up. I like going out but I’m also really private. I’m decisive for my clients but not in my own life.
“I certainly don’t take anything for granted. I have always pushed the limits, my whole life, but I won’t jump off a building or risk my life. I love life.”
And nothing is more important to Nyssa than her family.
“My family is seriously amazing – I don’t know how to explain how thankful I am for all their support but also for what they have been through with me my entire life. They are positive, happy, humble, successful people.”
Despite being let down by her health, she certainly has not been let down by her character or strong will. I believe 2010 will herald a new starting point for Nyssa Berryman; a starting point that is well overdue – the start of a pain-free existence.