Nic’s Story
Over the years, Nic has had many doctors turn her away for being ‘too complex a case’ however her now doctor is the perfect person to help her! This is her story...
Located 600km south of mainland Australia and surrounded by several oceans is the picturesque island of Tasmania. It’s here, in Launceston where Nic and her family call home.

Two days a week, you’ll find Nic at work, where she passionately works with students, to help them with their education. The rest of time days are predominantly occupied by spending quality time with her beautiful dog – Bronson Branan Shearing Madden the 1st (a Chinese Crested, powder puff shitzu cross,). When the children (of her now blended family) started growing into young adults, Nic’s parents decided it was time to get her a dog, due to mental health struggles of feelings of no purpose – he is what makes getting up everyday worth it for her. Companionship is the main reason for Bronson and the fact that even when Nic is unwell, she knows that Bronson needs to be looked after, so she forges ahead and makes sure he is fed, played with and loved.

Throughout her life, Nic has been sick, but it wasn’t until 2012, when she 34 years old that she received a diagnosis.

When Nic had her daughter in 2002 (who was three months premature), her daughter had constant hospitalisations for prematurity and neurosurgery. Nic was a ‘boarding mother’ in the maternity ward and was in and out of hospital with her daughter for the first 10 months of her daughter’s life. This is when Nic contracted a Golden Staph infection and was hospitalised herself for 8 weeks. At the time, she woke up thinking she was 15, unaware she had a child and a husband. After that period, it took a long time to recover post encephalitis flare ups. These days, she suffers from nocturnal seizures (during the night).

Being in Tasmania means there is less access to medical specialists and treatments. Over some time, Nic had many procedures including having part of her cervix removed at only nineteen years old. Her then GP was concerned and kept referring her to other specialists.  In 2012, Nic became very unwell, lost a lot of weight, her complexion became pale, she easily bruised and had issues with her gut. So, off she went to a Gastroenterologist in Tasmania to find answers. At this time, her then marriage broke down, leaving her parents to help support her through her health journey.

At one appointment with a gastroenterologist, she was advised that she needed to get all her affairs into order as he only gave her two years to live – due to her blood results being so terrible. She knew she was sick and was often labelled as ‘failure to thrive’ growing up but this was a lot to understand, when no one could tell her what she was sick with.

In 2012, Nic was advised that she has hypogammagloblinemia.  From this, she reached out to the community through the IDFA Facebook page asking of others in the same or similar situations to shed some light on what might be going on. From this, she was able to get some answers, and continue to ask medical professionals questions. Nic travelled to Hobart to see an immunologist and receive a formal diagnosis of Common Variable Immunodeficiency (CVID).

Over the years, Nic has had many doctors turn her away for being ‘too complex a case’ however her now doctor is the perfect person to help her. He is determined to keep Nic going and help her with every aspect of her life – including her dog!

Treatment for Nic has not been smooth sailing, she has not been successful in IVIg infusions, as she does not meet the criteria to quality, so as well as having the BEST GP in the world, she also takes probiotics, has her bloods done regularly, and has access to antibiotics when they are needed.

Nic, and many other IDFA members aim to not be defined by their immunodeficiency but live with it. For Nic, this means that she takes certain precautions to live her live smoothly and to the fullest. When at work, she is surrounded by children (in close proximity) so she always wears a mask and sanitises regularly. At the end of the workday, she goes home, showers, and washes all her clothing!

Even in Winter, every day, Nic will head outside for some of the day, be it sitting in the sun, relaxing with her dog, or just getting in some fresh air on her beloved veranda. Being in nature helps keep her grounded and helps her physically and mentally.  Nic has also learnt to listen to her body and know when she does need to rest and figure out if she is getting an infection, or if she is fatigued or if it’s something else. In her mind, she has a personal rewards system, where if she can get through something today, she can watch that documentary she has been thinking about.

Now days, although Nic is at a positive place (mentally), she has had many dark days, and challenges thrown her way. She is grateful of the IDFA and its members who have helped her on her journey to today. Nic acknowledges the need to reach out and ask for help, because ‘you don’t need to carry it on your own’. The social connections she has made, she is forever grateful for the bunch of ‘broken zebras’ all in it together!

Published: Month Year.