Comments for Rare Disease Support http://rarediseasesupport.org Building community and providing support for children, families and friends impacted by rare pediatric diseases Sat, 27 Feb 2010 22:11:04 -0600 hourly 1 Comment on Rare diseases and the similarities between ‘Education’ and ‘Health’ by Global Voices Online » Rare Disease Day: “Alone we are rare. Together we are strong.” http://rarediseasesupport.org/2010/02/19/rare-diseases-and-the-similarities-between-education-and-health/comment-page-1/#comment-7 Global Voices Online » Rare Disease Day: “Alone we are rare. Together we are strong.” Sat, 27 Feb 2010 22:11:04 +0000 http://rarediseasesupport.org/?p=384#comment-7 [...] the Rare Disease Support website, Nora tells her story: My son was diagnosed with a rare disease two years ago. He has had twenty surgeries, countless [...] [...] the Rare Disease Support website, Nora tells her story: My son was diagnosed with a rare disease two years ago. He has had twenty surgeries, countless [...]

]]> Comment on Narrative Medicine by nadine http://rarediseasesupport.org/2010/02/18/narrative-medicine/comment-page-1/#comment-6 nadine Mon, 22 Feb 2010 14:01:17 +0000 http://rarediseasesupport.org/?p=374#comment-6 I am so glad to see this piece, Nora. I am so interested in these aspects of health care. I have read a bit about different streams of traditional healing, and narrative is often one of the most important parts of the process. Our health care system is so poorly set up to deliver health care. We need to explore ways to look more broadly and deeply into the experiences of health and illness, and incorporate care of the full person, not just the diseased body organ. I think very often healthcare providers are afraid to ask, or don't want to know the narrative because they don't know what to do about it. They are trained to "fix" things like mechanics. But as the author you quoted above describes...just listen. Don't worry about fix. Listen with an open mind and heart. See what happens.... [WORDPRESS HASHCASH] The poster sent us '0 which is not a hashcash value. I am so glad to see this piece, Nora. I am so interested in these aspects of health care. I have read a bit about different streams of traditional healing, and narrative is often one of the most important parts of the process. Our health care system is so poorly set up to deliver health care. We need to explore ways to look more broadly and deeply into the experiences of health and illness, and incorporate care of the full person, not just the diseased body organ. I think very often healthcare providers are afraid to ask, or don’t want to know the narrative because they don’t know what to do about it. They are trained to “fix” things like mechanics. But as the author you quoted above describes…just listen. Don’t worry about fix. Listen with an open mind and heart. See what happens….

[WORDPRESS HASHCASH] The poster sent us ‘0 which is not a hashcash value.

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