marfanwife.blogspot.com
Married to Marfan'sA blog about the daily adventures of having a spouse with Marfan Syndrome.
http://marfanwife.blogspot.com/
A blog about the daily adventures of having a spouse with Marfan Syndrome.
http://marfanwife.blogspot.com/
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Married to Marfan's | marfanwife.blogspot.com Reviews
https://marfanwife.blogspot.com
A blog about the daily adventures of having a spouse with Marfan Syndrome.
marfanwife.blogspot.com
Married to Marfan's: January 2016
http://marfanwife.blogspot.com/2016_01_01_archive.html
A day-to-day account of what it's like to be married to someone with Marfan's Syndrome, a degenerative genetic disorder. Thursday, January 28, 2016. Probably, but then so does blind stupidity and stubbornness; that's a post for another day, though. Last night, before today came crashing down around us, we were watching the X-Files. Fire alarm, time to go! Then, out of nowhere, I heard, "Marfan Syndrome." Um, what? About seeing actors in various tv shows and movies who catch my eye as possibly having Marf...
Married to Marfan's: Money Honey
http://marfanwife.blogspot.com/2016/02/in-still-of-night.html
A day-to-day account of what it's like to be married to someone with Marfan's Syndrome, a degenerative genetic disorder. Tuesday, February 16, 2016. I couldn't stop thinking, though, about what this one visit meant for our future. A huge part of our current stress level is that I have no idea whether or not he's actually insured. His former employer fucked up and transferred both his information and mine, because he used to carry me on his insurance, to their new carrier,. He doesn't work there. It meant...
Married to Marfan's: November 2016
http://marfanwife.blogspot.com/2016_11_01_archive.html
A day-to-day account of what it's like to be married to someone with Marfan's Syndrome, a degenerative genetic disorder. Monday, November 21, 2016. The first thing my husband said to me once we realized the election results showed a picture we couldn't believe was true, was, "Well, I guess I'm officially just a useless cripple again." I could have cried, and if I wasn't so stunned by what I was seeing on CNN, I probably would have. I'm not interested in rationalizations, I'm not interested in hearing abo...
Married to Marfan's: Too Much
http://marfanwife.blogspot.com/2016/04/too-much.html
A day-to-day account of what it's like to be married to someone with Marfan's Syndrome, a degenerative genetic disorder. Monday, April 11, 2016. Still here. I've had too much occupying my brain lately, ever since my husband and I attended the Heartworks St. Louis. Again, with very few exceptions, that was the first time he'd ever been in a room with others who have Marfan's, and even more than that, knew that he did, too. I know he was self-conscious, despite the fact that no one was unkind, or rude,...
Married to Marfan's: April 2016
http://marfanwife.blogspot.com/2016_04_01_archive.html
A day-to-day account of what it's like to be married to someone with Marfan's Syndrome, a degenerative genetic disorder. Monday, April 11, 2016. Still here. I've had too much occupying my brain lately, ever since my husband and I attended the Heartworks St. Louis. Again, with very few exceptions, that was the first time he'd ever been in a room with others who have Marfan's, and even more than that, knew that he did, too. I know he was self-conscious, despite the fact that no one was unkind, or rude,...
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Marfanův syndrom - Zdravě.cz
Je geneticky podmíněná porucha vazivové tkáně. Tento typ tkáně se vyskytuje všude na těle, proto deformity pozorujeme na kostře, cévách, svalech, očích, kloubech atd. Syndrom se dědí po rodičích, ale může se také objevit nově, z neznámých příčin. Porucha je to hodně vzácná, faktem je, že ne vždy o ní postižený jedinec ví. Marfanův syndrom - příznaky. Dlouhé tenké končetiny, dlouhé a tenké prsty, vychýlení oční čočky, deformace hrudního koše, deformace páteře, hyperelastické klouby, vady na srdci a cévách.
Marfanův syndrom | MarfanůvSyndrom.com
26 září 2016 v 17:00. 22ročník kampaně Brněnské dny pro zdraví 2016. Přednáška pro širokou veřejnost na téma: Marfanův syndrom aneb když výška není jen krása, ale i nemoc. Místo konání: Knihovna Jiřího Mahena, Kobližná 4, Brno. 25 září až 4. října 2015. 21ročník kampaně Brněnské dny pro zdraví 2015. Brněnské dny pro zdraví je kampaň, jejímž cílem je ukázat veřejnosti, jak se dá v Brně žít zdravěji a systematicky ji motivovat k dlouhodobému zájmu o zdraví. 12102013 od 9ti hodin. Poprvé jsem se s tímto poj...
O sdružení | Marfanuvsyndrom
Založit novou webovou stránku nebo e-shop Chci nový web. Kliknutím na televizor otevřete nové okno a potom spusťte krátké video - 83 sekund). Http:/ www.rarediseaseday.org/solidarity. Vzácné onemocnění postihuje méně než jednoho z 2000 lidí, ale není nás vidět. Je více než 6000 vzácných onemocnění. Ta jsou rozdílná, ale čelíme stejným poroblémům. Dohromady jsou nás statisíce milionů lidí po celém světě. Každý z nás je ale skutečný živý člověk. Když budeš chtít, tak nás ale uvidíš. Odůvodnění k dodatku 27).
Marfan Syndrome | Welcome to the Marfan Association Victoria
What is Marfan Syndrome. Diagnosis and Treatment-including Clinical Genetics services contacts. Resources- videos & links. Help us make a difference. Faces of Marfan syndrome. Know the signs. Save a life! How can you help. This video focuses on recognising the signs and symptoms of Marfan syndrome, including recognising / suspecting an aortic dissection in an emergency situation and best treatment practices. Subscribe To Our Newsletter. You have Successfully Subscribed!
Ingin Share
Selasa, 07 Oktober 2014. Buat temen-temen DKM angkatan 27 :D. Kirimkan Ini lewat Email. Selasa, 15 Oktober 2013. Kenapa ya nulis tuh susah banget? Biasanya kalo mau nulis sesuatu suka lama banget mikirnya, padahal yang ingin ditulis tuh bukan hal yang rumit. Jujur ini tulisan pertama saya di blog ini mikirnya lama banget. semoga jadi pelajaran bagi saya dan semuanya :D. Tips agar tidak susah nulis/membuat narasi/bikin teks/dan lain-lain. 1 Niat, semua berawal dari niat, iya ngga? 6 Santai dalam menerima ...
Married to Marfan's
A day-to-day account of what it's like to be married to someone with Marfan's Syndrome, a degenerative genetic disorder. Monday, November 21, 2016. The first thing my husband said to me once we realized the election results showed a picture we couldn't believe was true, was, "Well, I guess I'm officially just a useless cripple again." I could have cried, and if I wasn't so stunned by what I was seeing on CNN, I probably would have. I'm not interested in rationalizations, I'm not interested in hearing abo...
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Home — MarfanWorld
WELCOME TO MARFAN WORLD. Marfan World, which was formally known as the International Federation of Marfan Syndrome Organizations was founded in 1992 at the Second International Symposium on Marfan Syndrome in San Francisco, California. The mission of Marfan World is to:. Share current, accurate information about the Marfan syndrome and related disorders worldwide. Facilitate international communication among medical professionals who serve the Marfan and related disorders community.
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Home - Marfanzine
My son has Marfan Syndrome. It is delightful. It is breathtaking. Not surprising then that so many artists have incorporated these long, lithe forms into their works. Picasso, Modigliani, Klimt and Giaccometti were all fascinated with this singular look a look embodied by the Marfan community. I wonder if any of us know how beautiful we truly are? Donate- The Gift of Giving. Connect With The Community.
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