Manage episode 326266902 series 3273773
Kristy lives with a rare disease called, Ornithine Transcarbamylase Deficiency - her body does not break down protein, which can result in a build-up of ammonia. She talks about what it is, how it's impacted her life and the path that directed her to become an advocate for others with rare disease.
It was informative and humbling to realize the stories we tell ourselves about others, without taking the time to talk with the source. Our discomfort should be an invitation, not an obstacle, to having real discussions about things we don't understand.
Kristy is taking her experiences as a patient, advocate & mentor and starting a podcast called, Chronically Kristy, which is slated to drop its first episode at the end of this month. Please tune in!
Because they are so rare, often there is little funding for research and the drugs needed for a more comfortable life are prohibitively expensive.
When thinking about giving (money, time, resources), please consider these organizations with which Kristy is involved:
Thank you to our amazing Anecdotal Anatomy TEAM! Click their names to visit their websites!
Judith George - Editor (video & audio)
Keith Kenny - Music
Cindy Fatsis - Photography