Battling with health issues like Dysautonomia, Chronic Fatigue Syndrome (CFS) and Common Variable Immune Deficiency (CVID), Kylie Drew and her family moved to Bendigo Australia in search of a better life. Kylie is married to Martin, her full time carer, and they have two beautiful children aged 10 and 2. Before her health declined in 2012, Kylie led a very active life; working full time, attending the gym, swimming and running marathons in under 3 and a half hours.

Kylie has been diagnosed with Dysautonomia – postural orthostatic tachycardia syndrome (POTS). If that term sounds familiar, it might be because this little known condition hit the headlines when it was revealed that Greg Paige – aka the “original” Yellow Wiggle – is also a sufferer.

In addition to Kylie’s primary diagnoses of Dysautonomia she also deals with a number of challenging and serious health issues including CFS, CVID, Neuroinflamation, chronic bronchitis and gastroparesis. In addition to this, Kylie was born with bilateral hip dysplasia which required extensive surgery as a teenager. She has also suffered from a small stroke.

Kylie worked full time up until 2014 as a Risk and Compliance Officer for a large superannuation fund, but became very unwell and spent a lot of time in hospital. Her employer was very flexible, accommodating her additional needs and making it possible for her to work from home part time. Unfortunately the onset and progression of Dysautonomia has had a huge impact on her capacity to work.

Dysautonomia causes Kylie many debilitating symptoms, one of these is that she faints regularly. Her treatment to assist in limiting fainting is 24/7 IV fluids. In 2015 she made the difficult decision to resign from her employment. This change meant that Kylie had to put her house on the market, leaving Sydney for Melbourne where Martin secured worked as Head of Investments for a superannuation fund. He had to resign less than three months later, in order to care for Kylie.

Kylie has a suppressed immune system due to her diagnosis of CVID, requiring monthly treatment in Melbourne with IVIG – this means she can’t spend a lot of time in public areas as she gets sick very easily. Kylie has been receiving her 24/7 IV saline and Hartmans infusion through a peripheral inserted central catheter (PICC) line in order to treat her Dysautonomia for the last four years. She will probably need this treatment for the rest of her life.

When Kylie is well enough the family likes to spend time together outdoors, and this has been made much easier since she purchased her power chair from Active Rehab. The use of this equipment has given her the freedom to be able to go to the park with her family, enjoy some fresh air and time in the sunshine with them.

Kylie has recently been invited by the Royal Melbourne Hospital to participate in a genetic research program exploring her CVID. With any luck, this valuable research will eventually lead to a better quality of life for people with CVID and their families.

Kylie was provided a Glide Centro power chair to meet her mobility demands and active lifestyle. For her seating needs, Spex Seating was provided as a suitable solution to enable the best comfort for her. A Spex back support, Spex cushion and Contoured head support assists with meeting Kylie’s seating requirements and provide comfort while Kylie is in her chair.

Medifab thanks Active Rehab for sharing Kylie’s story. Active Rehab are a Spex distributor, based in Bendigo, VIC, Australia who are committed to improving the quality of life for disabled people of all ages. Active Rehab offer the full range of Spex Seating, and can be contacted via email at [email protected] or phone +61 3 5441 8966