A 20-year-old model has revealed what it’s like living, working and dating with an ’embarrassing’ bowel condition – which means she suffers episodes of incontinence and has no control over her bowels.
‘I have had more than 24 surgical procedures,’ Anja told FEMAIL.
A 20-year-old model revealed what it’s really like living with an ’embarrassing’ bowel condition – which means she suffers episodes of incontinence and has no control over her bowels
Model Anja Christoffersen (pictured), from Brisbane, was born with VACTERL association, which means she struggles with a series of abnormalities
Anja (pictured) was diagnosed with VACTERL association before she was born, and since birth she has had more than 24 different surgical procedures
How is Anja affected by VACTERL association?
* V – Verterbral – She has an extra lumbar verterbrae, hemi-verterbrae (half-formed verterbrae), congenital scoliosis, sacral agnesis (missing tailbone and other bones in sacrum causing issues with pelvic nerves).
* A – Anal – She was born with a cloaca (one common channel), and it was a very long common channel which meant reconstruction was challenging. She only had one opening instead of three and so has had her intestine, urethra and two vaginas fused together.
C – Cardiac – Anja had a hole in her heart at birth which has since resolved itself.
TE – Tracheal-oesophageal – She was born without any connection to her stomach and her food pipe was connected directly into her airpipe, leading to her lungs.
* R – Renal – Anja only has one kidney.
* L – Limb – Anja is unaffected by this component, but in others it can show as shortened limbs or extra digits.
However, despite her illness, the beautiful 20-year-old said she has never let her illness define her.
‘I have never thought of myself as different or weird even though I was incredibly different in my body and was constantly in and out of hospital and doctors, having surgeries, tests and scans,’ Anja said.
Anja was diagnosed with VACTERL association at 28 weeks through her mother’s pregnancy, and this means she is affected in six different ways.
VACTERL association affects one in 10,000 to 40,000 births and the acronym spells out the effects it can have: verterbral, anal, cardiac, tracheal-oesophageal, renal and with her limbs.
‘Because I was diagnosed before I was born I was fortunate insofar as there were surgical teams on hand who could operate as soon as I was born,’ Anja said.
Doctors had to reconstruct Anja’s air and food pathways and perform a pelvic reconstruction.
Without those surgeries, she wouldn’t have survived.
Anja (pictured) said as she grew up, her parents were always ‘honest’ and ‘open’ with her about her condition – and so Anja learned to manage her incontinence
Her bowel incontinence is one of the most difficult aspects of her condition, as because she doesn’t have natural muscles in her rectum or anus, Anja (pictured in hospital) has to manually clear her body of waste
Anja said as she grew up, her parents were always ‘honest’ and ‘open’ with her about her condition – and so Anja learned to manage her incontinence, chronic pain and difficulty with breathing and swallowing.
‘As a child I remember doctors saying that I would be able to go to the toilet like a “normal person” when I was a teenager, instead of doing daily bowel washouts to manage my complete fecal incontinence,’ she said.
‘But when I got to my teenage years, things became even more complex, rather than easier, so this dream of my body working like everyone else’s shattered.’
Her bowel incontinence is one of the most difficult aspects of her condition, as because she doesn’t have natural muscles in her rectum or anus, she has to manually clear her body of waste.
Dating has proven particularly tricky, but Anja said she is always honest and upfront at the beginning of a relationship so she can ensure her potential partner is ‘genuine and can handle it’.
Anja told FEMAIL she always wanted to be a model – and hasn’t let her VACTERL association hold her back – she started modelling in 2015 and has since walked for Myer as well as at Amsterdam Fashion Week
Anja (pictured modelling) said she moved from regular modelling towards pageantry to give her a voice to spread her message to others
Anja told FEMAIL she always wanted to be a model – and hasn’t let her bowel condition hold her back.
She started modelling in 2015, and has since walked for Myer as well as at Amsterdam Fashion Week.
Anja said she moved from regular modelling towards pageantry to give her a voice to spread her message to others.
‘I chose pageantry as in modelling you are a coat hanger – seen and not heard – whereas in pageantry you have a voice and are able to advocate for the disadvantaged and key issues that are very important in society,’ she said.
Anja now raises awareness for VACTERL association and other chronic illnesses.
There have been ’embarrassing’ moments for the 20-year-old, including the fact that she is constantly in fear of suffering an episode of incontinence (pictured as a child)
Anja continues to spend plenty of time in and out of hospitals, and said the worst thing is that she sometimes feels ‘powerless’
There have been ’embarrassing’ moments for the 20-year-old, who constantly fears an episode of incontinence, which is what happened just before she finished her turn on the catwalk during a Myer show.
‘Every experience is a blessing – an opportunity to learn, grow or experience something unfavourable so I have the first-hand experience and power to change it,’ she said.
Anja continues to spend plenty of time in and out of hospitals, and said the worst thing is that she sometimes feels ‘powerless’.
‘You do not have control over your own body and it feels like you lose the right to say no to things as doctors have to do things for your benefit that are incredibly unpleasant.
‘I do not have control of my body, I can’t decide when I have an accident or lack of bowel control, I cannot decide when my heart begins racing and I pass out, and I cannot predict which days I will be so unwell that I cannot get out of bed.’
‘You have the ability to transform what you perceive to hold you back as an opportunity and platform to help others who are on similar journeys to yours,’ Anja said (pictured modelling)
Nevertheless, she remains positive and wants to teach others to be the same.
‘You have the ability to transform what you perceive to hold you back as an opportunity and platform to help others who are on similar journeys to yours,’ Anja said.
‘Never be defined by your illness or circumstances, you are born for a reason. You are never given more than you can handle.’
For more information or support, please contact the National Continence Helpline on 1800 33 00 66 or visit the Continence Foundation of Australia here.