DiscoverThis Podcast Will Kill YouEp 34 Cystic Fibrosis: Complete Somatic Rebellion
Ep 34 Cystic Fibrosis: Complete Somatic Rebellion

Ep 34 Cystic Fibrosis: Complete Somatic Rebellion

Update: 2019-08-2017
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Description

Despite being one of the most common genetic disorders, affecting millions of people worldwide, cystic fibrosis evaded medical description for thousands of years after its first appearance. But the last century has led to a revolution in diagnosis, treatment, and our understanding of the disease. This week we talk all things cystic fibrosis, from salty sweaty tests to European folklore, from Bell Beaker culture to gene therapy. And we are honored to be joined by Jay Gironimi, author of “Can’t Eat, Can’t Breathe, and Other Ways Cystic Fibrosis Has F#$%*d Me”, who chats candidly about his experience with CF. Oh, and the best part? Jay, also the talented musician behind All Hallow‘s Evil, wrote a custom song specifically for this episode! We loved it so much we named this ep after it, and we know you’re gonna love it too. 


You can find Jay’s book on amazon in both paperback and digital versions, find the audiobook version on audible and more of his writing at canteatcantbreathe.com. You can also find his music at allhallowsevil.bandcamp.com and follow him on twitter @allhallowsevil. 



Comments (5)

Julie Eldredge Colt

Since the gene name starts with CFTR . I wonder if the drugs have been called ***cafter as an expansion of those letters. excellent episode. those ion channel protein mutations cause so many problems!!

Aug 29th
Reply

Emily

Julie Eldredge Colt i agree

Aug 29th
Reply

Cassie Malchak

My mom is a respiratory therapist and she had a cousin who had CF and when my sister and I were babies she would lick our foreheads to see if we tasted salty since it's a sign of CF.

Aug 27th
Reply

Jacob

Cassie Malchak wish everybody have good health

Aug 28th
Reply

Dea Applegate

I really appreciate that you took the time to acknowledge that people are not or should not be identified by their disease and that it is very difficult to understand how someone's life is w a certain disease because of a person's own biased baseline for living. I also really enjoyed listening to his story and perspective of living with CF. I have lupus - it is on the mild end and very manageable but I get a lot of people making assumptions about what I'm able to do or my level of "sickness." People assume that I can't be sick or in pain since I rock climb and make efforts to stay physically active and fit, but they don't see or are aware of the weeks that I don't do anything because it's a struggle just to get out of bed. Or, if I'm not able to do something because I'm having a flare, people don't understand or downplay it because "well you don't look sick." it's very frustrating and would be helpful if people stopped making assumptions about living w a disease.

Aug 20th
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Ep 34 Cystic Fibrosis: Complete Somatic Rebellion

Ep 34 Cystic Fibrosis: Complete Somatic Rebellion