“I am so proud of how my condition has made me realize how precious life is and that I’m not alone on this journey I travel.”
The day-to-day struggles of living with a rare lung disease like Pulmonary Arterial Hypertension (PAH) can be very challenging. For mother of two, Kylie, mornings look a little different to most families. The 40-year-old begins her day by organising her medication that feeds into a pump connected to her chest which she must wear 24/7.
For 14 years, Kylie has been going about this intricate morning ritual, yet it still comes with high risk due to the danger of equipment becoming contaminated and causing infection. If the pump stops working at any point, Kylie has just 15-30 minutes to fix it before she goes into respiratory distress.
Once her morning routine is completed, the mother of two goes about her day caring for her teenage children, however the impact of her condition doesn’t stop there. Since her diagnosis, life has changed immensely. Shortness of breath and fatigue can make even the simplest of tasks a challenge and have taken a large toll on Kylie’s social life.
“I can’t do things that I once loved like swimming, playing sport and taking long walks. I been excluded from social events as now I am unable to drink, and some people have just given up inviting me to things.”
Living with a rare lung condition can be isolating and lonely. While family and friends are very supportive, it’s hard for people to understand the real toll of living with a terminal condition.
“When I was first diagnosed no one could understand how this could happen to me; I had never smoked, looked after myself and was genuinely a good person. Also, as it’s such a rare condition people always say, ‘well you don’t have cancer’. It can be so frustrating and hurtful when people are dismissive of your condition.”
For many Australians like Kylie diagnosed with a rare lung disease, Lung Foundation Australia support services and programs provide a lifeline – a steady hand in a very rough sea.
“There are people out there going through this same path. Listening and meeting people with this diagnosis is absolutely life-changing. It allows you the opportunity to hear first-hand accounts how life changes but also how it can still be amazing!
“Once I joined a support group, I made a group of friends who understand my condition and we all help each other out. Whether it’s just to chat or listen, to help someone fight to get help or just to share our journey with each other, this 100% helps get you through each day knowing you’re not alone. Through these support services, I have met some absolutely amazing people who I now call family.”
Kylie says when living with a rare condition, it’s vital to have access to resources and information that cover the specifics of the disease.
“When you are given so much information from your doctors it’s hard to take it all in. Having resources and information to refer to makes processing this condition much easier, as you have it at hand when you need it or are ready to learn more. There are always questions that you think of and having access to these is very helpful.”