Comments on: Pulmonary Haemosiderosis http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/ Like Kate Moss. But not. Thu, 09 Feb 2012 15:27:16 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Expat Mum http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-13224 Expat Mum Thu, 23 Oct 2008 02:42:38 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-13224 Hi Jo. Not sure why I've never been here before but it's very timely. I don't have the exact information your friend needs but I have a personal friend whose family has been devastated by Pulmonary Fibrosis. It's like scar tissue building up in the lungs and the patients asphyxiate. To date it's highly genetic but doctors have no idea why nor how to cure it. There is a Coalition for Pulmonary Fibrosis here in the States (www.coalitionforpf.org) where they may be able to direct your friend. They are certainly very helpful and care for anyone who goes to the web site with questions. I wish your friend luck. Hi Jo. Not sure why I’ve never been here before but it’s very timely. I don’t have the exact information your friend needs but I have a personal friend whose family has been devastated by Pulmonary Fibrosis. It’s like scar tissue building up in the lungs and the patients asphyxiate. To date it’s highly genetic but doctors have no idea why nor how to cure it.
There is a Coalition for Pulmonary Fibrosis here in the States (www.coalitionforpf.org) where they may be able to direct your friend. They are certainly very helpful and care for anyone who goes to the web site with questions.
I wish your friend luck.

]]> By: Skie http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-12864 Skie Wed, 01 Oct 2008 08:23:41 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-12864 Hi Jo My name is Skie I was diagnosed with Pulmonary Haemosiderosis when i was 8 and i am 22 now so its been a huge part of my life and unfortunatly my families life. I dont know alot about it when i was diagnosed i was 1 of only 2 people in Australia to have it so that was very hard to cope with. But today im just like any other person i havent coughed up blood or felt weak and heavy or anaemic since i was 14 so there is a huge chance for you friend to do the same i know it sounds really scary and it is but if doctors can pick it up quick enough the better chance she will have same with you bryce i wish your friend Marie and you Bryce the best of luck and just keep fighting it cos it is really worth it trust me. Hi Jo
My name is Skie I was diagnosed with Pulmonary Haemosiderosis when i was 8 and i am 22 now so its been a huge part of my life and unfortunatly my families life. I dont know alot about it when i was diagnosed i was 1 of only 2 people in Australia to have it so that was very hard to cope with. But today im just like any other person i havent coughed up blood or felt weak and heavy or anaemic since i was 14 so there is a huge chance for you friend to do the same i know it sounds really scary and it is but if doctors can pick it up quick enough the better chance she will have same with you bryce i wish your friend Marie and you Bryce the best of luck and just keep fighting it cos it is really worth it trust me.

]]> By: Bryce oliver http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11858 Bryce oliver Thu, 31 Jul 2008 06:19:47 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11858 Hi i was diagnosed about eight weeks ago with this condition.Id coughed up blood five days in a row so i went to the doctor.And the tests started from there its been a long haul.I am a 24 year old male i am very anaemic.I would be very happy for future corrospondence and email you with info either way.Hope to hear from you .Regards Bryce oliver Hi i was diagnosed about eight weeks ago with this condition.Id coughed up blood five days in a row so i went to the doctor.And the tests started from there its been a long haul.I am a 24 year old male i am very anaemic.I would be very happy for future corrospondence and email you with info either way.Hope to hear from you .Regards Bryce oliver

]]> By: Troy Mullens http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11820 Troy Mullens Mon, 28 Jul 2008 19:55:46 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11820 Here's a link that might interest you. <a href="http://www.news-medical.net/?id=25962" rel="nofollow">Click here</a>. Troy Here’s a link that might interest you.
Click here.

Troy

]]> By: Daryl http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11817 Daryl Mon, 28 Jul 2008 19:18:25 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11817 Jo my sister sent me these two links http://www.news-medical.net/?id=25962 http://www.makingcontact.org/index.php?ci=1381 Jo my sister sent me these two links

http://www.news-medical.net/?id=25962

http://www.makingcontact.org/index.php?ci=1381

]]> By: Daryl http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11807 Daryl Sun, 27 Jul 2008 20:39:25 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11807 Just added a post on my blog in the hope someone may know something and help! Just added a post on my blog in the hope someone may know something and help!

]]> By: You rock, and I don’t mean you’re like a pebble ok? http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11637 You rock, and I don’t mean you’re like a pebble ok? Wed, 23 Jul 2008 00:50:07 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11637 [...] an enormous THANK YOU to everyone who has commented and acted on my post about my friend Marie and Pulmonary Haemosiderosis. You have given us some brilliant ideas and definitely some hope. I will be passing all this on to [...] [...] an enormous THANK YOU to everyone who has commented and acted on my post about my friend Marie and Pulmonary Haemosiderosis. You have given us some brilliant ideas and definitely some hope. I will be passing all this on to [...]

]]> By: Hotmamamia http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11624 Hotmamamia Tue, 22 Jul 2008 21:01:17 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11624 Jo--Here is an article I found that gives a treatment for this that is apparently somewhat successful. I will also ask my dad's pulmonary surgeon about it. http://www.medicalnewstoday.com/articles/72840.php Came to you via Lilacspecs...my daughter.... Jo–Here is an article I found that gives a treatment for this that is apparently somewhat successful. I will also ask my dad’s pulmonary surgeon about it.

http://www.medicalnewstoday.com/articles/72840.php

Came to you via Lilacspecs…my daughter….

]]> By: PFG http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11623 PFG Tue, 22 Jul 2008 20:59:02 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11623 Hi, I'm here from Bubblewench's blog (Blogs of Life). I am so sorry to hear about Marie's illness. I did some poking around this morning and found if you give it a US spelling, you get more hits on google (47,600 for "pulmonary hemosiderosis"). More still if you use just the term "hemosiderosis", although some of those hits will involve other organs (I guess kidneys can be affected too in some folks?). I only got through a few pages for each of the above searches but it seems most of the results are medical information in nature, and not support groups. However, I’m hopeful that using alternate spellings or other names for the disease might yield some hits. I did find one that seems to possibly warrant pursuing. I’m going to try to put in the link but if it fails, email me, ok? Madison's Foundation is an organization which helps put parents of children with diseases in touch with one another - they have <a href="http://www.madisonsfoundation.org/index.php/component/option,com_mpower/Itemid,49/diseaseID,534" rel="nofollow">a hemosiderosis page</a>. Good luck to you and I'm sending my wishes for your friend to rally. Hi, I’m here from Bubblewench’s blog (Blogs of Life). I am so sorry to hear about Marie’s illness.

I did some poking around this morning and found if you give it a US spelling, you get more hits on google (47,600 for “pulmonary hemosiderosis”). More still if you use just the term “hemosiderosis”, although some of those hits will involve other organs (I guess kidneys can be affected too in some folks?).

I only got through a few pages for each of the above searches but it seems most of the results are medical information in nature, and not support groups. However, I’m hopeful that using alternate spellings or other names for the disease might yield some hits.

I did find one that seems to possibly warrant pursuing. I’m going to try to put in the link but if it fails, email me, ok? Madison’s Foundation is an organization which helps put parents of children with diseases in touch with one another – they have a hemosiderosis page.

Good luck to you and I’m sending my wishes for your friend to rally.

]]> By: Irish Coffeehouse http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/comment-page-1/#comment-11609 Irish Coffeehouse Tue, 22 Jul 2008 15:27:18 +0000 http://www.jobeaufoix.com/2008/07/20/pulmonary-haemsiderosis/#comment-11609 You are such a sweet and dear friend. She and her entire family will be in my prayers. You are such a sweet and dear friend. She and her entire family will be in my prayers.

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