I am involved in the COPD Foundation, and I am on the Propeller App advisory board. I am interested in traveling to Capitol Hill as a patient advocate with the COPD Foundation to represent people with Asthma ,COPD, and chronic respiratory conditions. I have had asthma all my life which has turned into COPD. I am on disability because of my condition. I was on prednisone for 5 years as a child which could have contributed to my spinal issues resulting in fusions or metal rods in all but 2 vertebrae in my back.
I recently shared my story with ResMed, a medical technology company focused on respiratory disease, in a recorded interview and a graffiti artist interpreted my experience. ResMed works with clinician and patient organizations to support their voices. After my recent experience, which was displayed at ViVE, a health technology conference, ResMed offered to sponsor patient organizations to help patients like me speak with policy makers to get our point of view across. I, and I’m sure other patients, can’t afford to go to these events as we are forced to choose between working or our very expensive medication.
As a child I also went to Camp Superkids for 2 weeks out of every summer in the 80’s where I learned how important it is to advocate for yourself, and I learned I can do almost anything anyone else can do with limitations and time. My whole life I have hit brick walls trying to keep a job or afford my medicine.
My children are all grow up now, so I find myself doing nothing but advocating and giving myself a purpose to help others with these nasty lung Issues. I like to find some humor in it, but I also speak from my heart.
I had given up a year ago and accepted I was going to suffocate to death, but I have new hope in being able to try to change our medical views (like Zoom, o2 sensors, etc.) and equipment that better maintains our health at home, so we don't have to choose between work or medicine, doctor's appointments, etc.