jrmarfan58.com
HomeLiving with Marfan Syndrome is what this site is all about. The life story of Jon, and how he has learned to cope over the years.
http://www.jrmarfan58.com/
Living with Marfan Syndrome is what this site is all about. The life story of Jon, and how he has learned to cope over the years.
http://www.jrmarfan58.com/
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Jon Rodis
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Home | jrmarfan58.com Reviews
https://jrmarfan58.com
Living with Marfan Syndrome is what this site is all about. The life story of Jon, and how he has learned to cope over the years.
jrmarfan58.com
Emergency Alert Info
http://www.jrmarfan58.com/id16.html
Jon Living with Marfan. The Next 10 Years. Links and Thank You. More Facts and Info. Many Faces of Marfans. New England Support Groups. PATIENTS WITH MARFAN SYNDROME OR A RELATED DISORDER ARE AT 250 TIMES GREATER RISK OF AORTIC DISSECTION THAN THE GENERAL POPULATION. The most definitive tests for Aortic Dissection are:. CT SCAN - TRANSESOPHAGEAL ECHOCARDIOGRAM - MRI. Choose the one that is most readily available, and expertly performed and interpreted.
Hospital Era
http://www.jrmarfan58.com/id3.html
Jon Living with Marfan. The Next 10 Years. Links and Thank You. More Facts and Info. Many Faces of Marfans. New England Support Groups. Beginning of the Hospital Era:. In 1981, when I was 22 years old, I had my appendix removed. I had it done at Beth Israel hospital. My family told them that I had Marfans and at the time, I really wasn't exactly sure what Marfans was or how it related to surgery but if it was useful information so be it. Jon's graduation 1984 cousin Diana, Jon and cousin David.
Links 2
http://www.jrmarfan58.com/id11.html
Jon Living with Marfan. The Next 10 Years. Links and Thank You. More Facts and Info. Many Faces of Marfans. New England Support Groups. Massachusetts Marfan Group at Yahoo. Marfan Syndrome - Does Diet Play A Role? International Association for Medical Assistance for Travelers. Ehlers Danlos Info Site. Kathleen and I would like to say Thank You again for reading my web site. Please take advantage of all the links above for important information. Sharing our sites with each other helps us all.
Jon's Symptoms
http://www.jrmarfan58.com/id8.html
Jon Living with Marfan. The Next 10 Years. Links and Thank You. More Facts and Info. Many Faces of Marfans. New England Support Groups. Below is a list of most of my symptoms. Please understand everyone is an individual case. Some Marfans sufferers may have less, others may have more. Fatigue - sometimes very strong/general fatigue daily. Probable cause(s): atenenol, bleeding, joint issues, dural ectasia, stress, body pain, fibromyalgia. Shortness of breath: - pretty much daily. Other Symptoms - Achey-lo...
Physician Awareness
http://www.jrmarfan58.com/id19.html
Jon Living with Marfan. The Next 10 Years. Links and Thank You. More Facts and Info. Many Faces of Marfans. New England Support Groups. The following information is set up as downloadable file links. You may open each one and read the information, or if you choose, you may download the file. 1 Physican Awareness Committee Letter. 2 Loeys Dietz Aortic Aneurysm Syndrome. 3 Kathy Ackroyd Letter. 4 Disability Workshop-Bios. JR- KK Contact Info. 6 Update-PAC -October, 2009. For more details on the event.
TOTAL PAGES IN THIS WEBSITE
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Tall Like The Sunflowers: Annual Visit
http://marfangirl.blogspot.com/2010/08/annual-visit.html
Tall Like The Sunflowers. Just a mom and a wife managing to keep it all together with a daughter and husband with Marfan Syndrome. Wednesday, August 18, 2010. Yesterday was full of nerves - the annual visit to Hopkins for B and G's checkups at the genetics clinic. The result of the 6 hours worth of doctor appointments - status quo. And I am just fine with that. With the kind of aorta damage that Hubby has.). I woke up this morning feeling so much better. We got through it - surgery #2. Is joining the fam...
Home | Musings of a Marfan Mom
https://marfmom.wordpress.com/2010/02/18/home
Musings of a Marfan Mom. Friday Favorites →. February 18, 2010 · 2:10 AM. The ache for home lives in all of us, the safe place where we can go as we are and not be questioned. I have a few different homes. I have the home I live in with my husband and our son and cat. I have my extended family home. The group of girls I grew up with. The congregation I attended from age 11 until I got married at 22. A group of my Alpha Phi Omega (co-ed) fraternity brothers. And Love me, I’m one of you! Because for the fi...
NEW WEBSITE | Musings of a Marfan Mom
https://marfmom.wordpress.com/2010/02/21/new-website
Musings of a Marfan Mom. February 21, 2010 · 11:13 AM. PLEASE UPDATE YOUR BLOG ROLLS AND READERS! THIS SITE HAS MOVED TO. Thank you so much for reading, and I hope to see you over at the new, self-hosted, site! One response to “. February 23, 2010 at 2:43 PM. Just stopping by to thank you for visiting me on my SITS day and leaving some blog love! Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public). Own Your Own Health.
Conference Recap | Musings of a Marfan Mom
https://marfmom.wordpress.com/2009/08/19/conference-recap
Musings of a Marfan Mom. Six Flags →. August 19, 2009 · 7:28 AM. Sat night a family from another country came to see me and I took them to meet some of the teens. It was the first time the son had ever met another person that looked like him. The father looked around at the teens in wonder and asked me How many years have these kids known each other? And prep for officially kicking off the weekend. I can’t think of a better way to get things started than by having Rick Guidotti from Positive Exposure.
Marfan Through a Mother’s Eyes | Musings of a Marfan Mom
https://marfmom.wordpress.com/2010/01/18/marfan-through-a-mothers-eyes
Musings of a Marfan Mom. Support Ehlers-Danlos Syndrome Research! January 18, 2010 · 12:32 AM. Marfan Through a Mother’s Eyes. Today starts a three-part series: Marfan Through the Eyes of the Unaffected. You’ve read my story. But what about how Marfan has affected those around me? Her fiancée pointed at Mark and said, Well,. And that got me thinkingwhy. I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? There were a few...
Musings of a Marfan Mom | Page 2
https://marfmom.wordpress.com/page/2
Musings of a Marfan Mom. Newer posts →. February 12, 2010 · 12:33 AM. I’m starting a new meme on my blog called Friday Favorites. Each Friday I’ll feature an article or articles from other bloggers that I’ve really enjoyed over the week. If any of you think you might like to participate from time to time, I’ll set up a Mr. Linky account. So, here are this week’s favorites, in no particular order:. Anne at Dou-La-La is a blogger I’ve gotten to know from Twitter. I thought it was great! Because her baby wa...
The Situation | Musings of a Marfan Mom
https://marfmom.wordpress.com/2010/02/17/the-situation
Musings of a Marfan Mom. February 17, 2010 · 1:15 AM. Well, the votes are in. They came from the blog, from Twitter, from Facebook, and emails. The Situation it is (by far). Original photo from http:/ chichi212.com/files/2009/12/mike-the-situation-306x460.jpg. I think he rocks it, don’t you? And no, I was not responsible for this awesome picture. Credit goes to April, aka Kethaera. Check out her artwork. Honorable mention for a brace name goes to Kristi. 6 responses to “. February 17, 2010 at 6:19 AM.
My Life With Marfan, Part 3 | Musings of a Marfan Mom
https://marfmom.wordpress.com/2009/07/13/my-life-with-marfan-part-3
Musings of a Marfan Mom. July 13, 2009 · 10:24 PM. My Life With Marfan, Part 3. Previous installments in this series can be found. I had decided that my mission was to make sure 1) everyone knew about Marfan and 2) people with Marfan knew how to advocate for themselves, especially in emergency situations, so that no one would die of aortic dissections anymore. Impossible goal? Yes But, I’m only going to stop trying to reach it when I’m dead. Ran the teen programming back then. At first I was really n...
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JRM Architect home page
JRM Architicts - Home
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Jr Marcin Iwankiewicz | My perspective on the World.
My perspective on the World. Deftones – Minerva. On Shared from WordPress. On Shared from WordPress. On VICE News’ potray of…. On VICE News’ potray of…. Korba on Black Ops. Deftones – Minerva. This song is quite interesting. I believe this song is spiritual. And what do you think? Watch “P.O.D. – Speed Demon (Audio)” on YouTube. Help My Unbelief: An Interview With Barnabas Piper. Create a free website or blog at WordPress.com. Create a free website or blog at WordPress.com. Join 470 other followers.
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MARFAN SYNDROME: JR FACT SHEET. Jon Living with Marfan. The Next 10 Years. Links and Thank You. More Facts and Info. Many Faces of Marfans. New England Support Groups. Ehlers-Danlos and CTD New England/Massachusetts Support Group. E-Mail . JRMarfan58@aol.com. My name is Jon. I am a 59 year old Boston man who lives with a condition known as MARFAN SYNDROME. MARFAN SYNDROME: - A HARD LOOK -. Excerpts from the Marfan Foundation).
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Miércoles, 22 de abril de 2015. 191;Qué vamos a elegir el próximo 7 de junio? Contrario a las teorías políticas, la experiencia en México nos muestra que, en estos comicios, solo se va a avalar el acceso al poder político y a los recursos públicos federales, estatales y municipales a poco más de 2000 personas , entre estos a nueve gobernadores, 500 diputados federales, 639 diputados estatales y unos 900 alcaldes en 17 estados. En respuesta a la pregunta ¿Qué vamos a elegir? Esto es un resultado de una pr...
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