028: Eric on living with Cystic Fibrosis
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Eric is originally from Philadelphia, PA, and was born with cystic fibrosis. Diagnosed at the age of 1, his original life expectancy was between 10-14 years. As advances in medical treatment have moved forward, so has his life expectancy…so much so that Eric has now, at 41, surpassed his doctors’ hopes. He moved to Southern California as an adult to take advantage of the statewide Genetically Handicapped Persons Program, which enables him to get his treatments and medications fully covered by insurance. Rather appropriately, he has channeled his passion for environmentalism – and the idea of creating pathways to combat climate change – into a career as a solar engineer. You may hear him cough periodically in this interview, which is one of the symptoms of living with CF – as mucus builds up in the lungs, he has to cough it loose.
**In this episode, we dive into.... **
what cystic fibrosis is and how it affects the body
that when Eric was born, the life expectancy for patients was 10-14 years; that advances in treatment have increased his life expectancy greatly – and he has now surpassed doctors’ expectations
how he was initially diagnosed at the age of 1
that CF affects the exocrine glands, which can include the digestion – as well as the pancreas and lungs
that he takes 80+ pills a day to survive
- the Genetically Handicapped Persons Program, and how he moved to CA to take part in this program and get his treatments and medications fully covered by insurance
that his parents were not only active fundraisers for CF awareness, research, and treatment; but that his mom ended up going to nursing school and becoming a CF clinic nurse
where we can find out more about CF: through the archived video blogs of the late Claire Wineland
that it takes him at least 2 hours/day to complete his treatments, and he has to adjust his lifestyle around it
that he has worked part-time for most of the last decade in order to effectively manage his health – to manage his stress
that there are varying levels of CF severity – some patients only have GI problems, and no lung issues; others aren’t diagnosed until they are in their 40s or 50s
that he had part of his lung removed at the age of 11 because it was a source of repeated infection; after this surgery, he went several years without being admitted to the hospital with an infection
that he developed a community during his hospital stays, and he looked forward to seeing his friends during his visits
“the world kind of absolves you of responsibility when you go to the hospital”
that to his knowledge, he is the only one of his peers from growing up who has survived CF
the emotional toll of losing friends so young
that he learned to be his own health advocate at an early age
that CF doesn’t define who he is – it’s an aspect of his lifestyle
that his work is a source of inspiration, and an area in which he’s willing to spend his limited time This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)
