Comments on: FALS Patients Like You: An Interview with Samperio http://blog.patientslikeme.com/2009/07/08/fals-patients-like-you-an-interview-with-samperio/ PatientsLikeMe - Patients helping patients live better every day Wed, 16 May 2012 21:10:20 +0000 http://wordpress.org/?v=2.7 hourly 1 By: Laurie Jakubauskas http://blog.patientslikeme.com/2009/07/08/fals-patients-like-you-an-interview-with-samperio/comment-page-1/#comment-34547 Laurie Jakubauskas Sat, 17 Apr 2010 13:35:24 +0000 http://blog.patientslikeme.com/?p=988#comment-34547 When will people recognize fibro/cfs is a way for pharmacuticals to make $. It is viruses & tickborne diseases. I am 100% better after being properly diagnosed & treated. watch the documentary "Under Our Skin". I almost died. I get so angry when I read these stories. Fibro/cfs are labeling you w/name & not finding what"s really wrong w/ you. I hope some og you look further into this. When will people recognize fibro/cfs is a way for pharmacuticals to make $. It is viruses & tickborne diseases. I am 100% better after being properly diagnosed & treated. watch the documentary “Under Our Skin”. I almost died. I get so angry when I read these stories. Fibro/cfs are labeling you w/name & not finding what”s really wrong w/ you. I hope some og you look further into this.

]]> By: M. Farr http://blog.patientslikeme.com/2009/07/08/fals-patients-like-you-an-interview-with-samperio/comment-page-1/#comment-22550 M. Farr Fri, 17 Jul 2009 13:19:05 +0000 http://blog.patientslikeme.com/?p=988#comment-22550 Hi! Our family has been riddled with FALS for at least 200 years - first officially documented with Dr. Osler's report here: http://is.gd/1CaIZ. The Farr family has the SOD1 A4V mutation as well. Just wanted you to know you are not alone in your fight, this family is in it with ya! This site is amazing and allows a level of information sharing about patient(family) progress and available treatments that I haven't seen before. I would love to see a "family tree" feature so we can connect family members that have the disease. This will help us further understand the penetration of the disease within the family, cross generations. Also provide a valuable resource for future generations trying to understand the history of the family as related to these specific genetic conditions. Hi! Our family has been riddled with FALS for at least 200 years - first officially documented with Dr. Osler’s report here: http://is.gd/1CaIZ. The Farr family has the SOD1 A4V mutation as well. Just wanted you to know you are not alone in your fight, this family is in it with ya!

This site is amazing and allows a level of information sharing about patient(family) progress and available treatments that I haven’t seen before. I would love to see a “family tree” feature so we can connect family members that have the disease. This will help us further understand the penetration of the disease within the family, cross generations. Also provide a valuable resource for future generations trying to understand the history of the family as related to these specific genetic conditions.

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