For Cobey, research means the chance to grow old with her husband and hope for a cure.
In 2018, aged just 21, the newlywed, pharmacist and self-confessed dog lover was diagnosed with a rare and incurable lung disease – Idiopathic Pulmonary Arterial Hypertension (PAH).
Cobey’s condition has forced her to reconsider her future plans, like starting a family. While advancements in treatment currently allow her to live a relatively normal life, Cobey knows that at some point the medication may stop working and without research to uncover more options, a lung transplant will be a likely necessity.
“I was totally devastated when I was diagnosed. It turned my life upside down. At 21, you don’t expect to be told you have a life-threatening disease with no cure. Not when you think you have the rest of your life ahead of you. Every day is a mental and physical battle, but I refuse to let it beat me.”
“I was told that at this stage having children would be very dangerous and that the medication I was put on to help my disease could cause birth defects. My husband and I had talked about having children in the future, but my diagnosis has made us re-evaluate these plans.
“Since I’ve been diagnosed and put on medication, my life has improved. Medical advances have come a long way and I’m hopeful of what the future holds with more research.
“PAH is considered an incurable disease, if research could find out exactly how it develops than maybe they could find a way of curing it without patients having to undergo a lung transplant.
“If I do have to undergo a lung transplant, research may help find a way to develop lungs made from my own cells which would reduce the likelihood of organ rejection and the need to be on lots of medications that prevent rejection or those that treat the side effects of anti-rejection medications. This would mean that I could live my life to the fullest, free of organ rejection worry, side effects of medications and lungs that are failing me.
“There is no doubt that research changes lives – it has helped get combination therapy listed on the PBS so that more people with my disease have access to it and can afford it. It has helped develop medicines that don’t require a continuous intravenous infusion which means patients like me can live a more normal and better quality of life without being attached to a pump 24/7.
“Support for research into PAH shows me that other people do care about improving the lives of those suffering from PAH and that whilst I may have an invisible disease, I am not invisible to researchers.
Please consider donating to support lung health research, you have no idea how many people you can help. You will help not just patients suffering from lung disease but all their loved ones too as lung disease does not just impact the patient, but their families and loved ones. Your support could improve a patient’s quality of life, help find a new medication or develop a cure for a disease. Every dollar has the potential to improve or save a life.”