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A Rare Conversation with Kristy McCracken - After the Because E8 (18)
Manage episode 326266902 series 3273773
コンテンツは Theresa Tobin Macy & Sherry Sadoff Hanck, Theresa Tobin Macy, and Sherry Sadoff Hanck によって提供されます。エピソード、グラフィック、ポッドキャストの説明を含むすべてのポッドキャスト コンテンツは、Theresa Tobin Macy & Sherry Sadoff Hanck, Theresa Tobin Macy, and Sherry Sadoff Hanck またはそのポッドキャスト プラットフォーム パートナーによって直接アップロードされ、提供されます。誰かがあなたの著作権で保護された作品をあなたの許可なく使用していると思われる場合は、ここで概説されているプロセスに従うことができますhttps://ja.player.fm/legal。
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:
National Urea Cycle Disorders Foundation
Remember the Girls
National Organization for Rare Diseases
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
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