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A blog about VACTERL: introducing Anja Christoffersen

01 October, 2018

I recently received an email inviting me to a new book launch for a book called Behind the Smile: An inspirational journey from disability to ability by Anja Christoffersen. The following summary of the book is from the cover of Anja’s book.

Anja Christoffersen learned early on that you can never judge a book by its cover. Born with a congenital disability that deformed her digestive, skeletal, reproductive, circulatory, urinary and respiratory systems; she had her first surgery at five hours old. Despite a grim diagnosis, from the outside you would be unable to tell she was any different.

You would never have known that at birth, the medical fraternity warned that she would never live a normal life. Once Anja grew to an age where she could understand her medical differences, she made the decision that she did not want an ordinary life anyway – she wanted an extraordinary one. As soon as Anja realised happiness is a choice, she made the decision she would be happy despite her circumstances. From surgical theatres to chasing her dreams led her to a career as an international fashion model.

Anja from a young age seemed to chase a dream of not letting her significant disability ruin her life. She says:

I didn’t realise my success was survival and experiencing it with a smile on my face. There was nothing more I had to accomplish in life than just be happy”- Behind the Smile, page xi

When I saw her book cover I was intrigued as it seemed incomprehensible to me that someone with that extent of dysfunction could end up wearing a beautiful white bridal outfit on a catwalk! Reading Anja’s contribution has certainly turned those thoughts on their head. Her words are inspirational and as says in her book she aspires to be, not just a model, but a wonderful role model for anyone with a disability.

“I wanted to be more than just a model. I wanted to be a role model. I wanted to walk on the international catwalks on my own merits, not to have it gifted to me as the token disabled girl. I wanted to make it myself, so I could say that I did it. I wanted to inspire people with my condition and any rare disease or chronic illness that they could follow their dreams regardless of their diagnosis. I wanted to bring hope to the mothers of sick babies that they can get through it and flourish. I wanted to be the positive success story that empowers others to follow their joy and passion, no matter what it is, and no matter the odds that are against them” – Behind the Smile, page 111

Join Anja as she walks the catwalks of Australia and Europe with her hidden medical condition, overcomes challenges and discovers how to keep smiling – no matter what.

I contacted Anja on learning about her book launch and asked her if she could elaborate on her extraordinary life and she kindly sent me the following to help me to understand more about the life-impacts for her. It is a condition which has varying degrees of disability in the continence area and I hope through this blog the word will be spread to others who may have significant issues and that they and their parents may gain hope.

I was born with VACTERL Association in 1998. Barely anyone knows what that is now, so you can imagine the medical fraternity’s experience with it 20 years ago. Growing up, the best way to describe my condition to other 5-year-old’s was, “I was born without a bottom.” In reality, I was born with one main opening where my intestine, urethra and duplicated vaginas drained into.

Immediately, I had to have a colostomy and vesicostomy made so there was a way for anything I ate and drank to leave my body. At 7-months-old I had what is commonly referred to as “Pull Through Surgery” where I was cut from my clitoris to my buttocks to reconstruct everything, just so I could function ‘normally’.

Imperforate anus surgery

What that meant for me was a short-term anal dilatation, vaginal dilatation in my teens and incontinence for life. As none of my openings were natural, I did not have the typical nerve system, muscle complex, anal sphincter or rectum. Dilatation would battle scar tissue and I began rectal enemas to try to forge some routine with my bowels to prevent constant accidents.

Amongst this, I had many other issues associated with VACTERL, all except a limb abnormality. Blessing or a curse; I was graced with a hidden illness that was unknown and unseen to others, and commonly misunderstood by health professionals.

Despite challenge after challenge, and setback after setback, I landed an international modelling contract at the age of 17 and walked Amsterdam Fashion Week the day before my 18th birthday.

Since then, I have been getting involved in the VACTERL and Imperforate Anus community and have become a part of the Resource Development Team of the One in 5000 Foundation started to support those with Anorectal Malformation (ARM).

In July 2018 a few weeks after my 20th Birthday I had the opportunity to present and tell my story to a room of 400 people in the ARM community at the Pull Thru Network Conference in Phoenix, Arizona.

OMG what a story Anja! So inspirational for any young person entering their teens and wondering what their future holds if they have this condition or any other significant congenital disability. And to be so young and to take on roles in education and being an ambassador for VACTERL – such a public position to take. You are simply amazing!

Another common condition with VACTERL is Tracheo-Oesophageal Fistula (TOF). These are variations on TOF and a common complication of a TOF is chest infections which require regular respiratory physiotherapy.

I do think Anja’s book would be so useful as a compulsory read for any medical student to educate them about the heights that people with a disability can reach rather than dispensing gloom and doom to new parents who are facing the diagnosis of something as complex as VACTERL.

Self-belief seems easy when things are going your way, but when life presents challenge after challenge, and obstacle after obstacle, giving up or dismissing a positive story is easy. There were many times I could have given up on myself. The doctors gave up on me ever living a ‘normal life’ before I was even born. It would be celebrated if I could survive, let alone live.” – Behind the Smile, page 2

Luckily Anja had a wonderful, happy nature and obviously a family who fostered this self-belief attitude and this has led to a fulfilled life at such a young age.

“I was a very joyful and flamboyant child, and neither myself or my mother allowed my disability to hold me back in any way. I would always be so excited for different experiences, and despite needing to consider the logistics of how to manage my condition in different environments, it never dulled my enthusiasm.” – Behind the Smile, page 29

I recommend this book to you, your friends and any book clubs and look out for Anja’s Book Launch on Thursday October 11th in the Valley. Contact Anja if you are interested in attending on Ph 0418755691.

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