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Coming Unglued | facing life with Ehlers-Danlos Syndrome

facing life with Ehlers-Danlos Syndrome

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Coming Unglued | facing life with Ehlers-Danlos Syndrome | ddvaughan.wordpress.com Reviews
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facing life with Ehlers-Danlos Syndrome
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1 coming unglued
2 about eds
3 blog info
4 research
5 stories
6 posted on
7 filed under awareness
8 ehlers danlos syndrome
9 life's lessons
10 related disorders
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coming unglued,about eds,blog info,research,stories,posted on,filed under awareness,ehlers danlos syndrome,life's lessons,related disorders,tags celiac disease,eds iv,gastroparesis,rare diseases,vascular ehlers danlos syndrome,veds,should kno,so far,heds
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Coming Unglued | facing life with Ehlers-Danlos Syndrome | ddvaughan.wordpress.com Reviews

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facing life with Ehlers-Danlos Syndrome

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1

The EDS Online Survey | Coming Unglued

https://ddvaughan.wordpress.com/eds-online-survey

The EDS Online Survey. The EDS Online Survey. Since my husband’s death in 1998 from VEDS, there have been great strides made in the availability of information for patients and families coping with all types of EDS. With the explosion of social networking sites, I’ve managed to “meet” more people with EDS in the last 10 months than in the previous 13 YEARS. 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). EDS Network ...

2

Stories | Coming Unglued

https://ddvaughan.wordpress.com/stories

The EDS Online Survey. More than statistics, more than long boring scientific facts, it’s the stories of how Ehlers-Danlos syndrome affects “real” people that matter more than anything. Whether they are facing life-threatening aneurysms, or living life in daily, unending pain – these men, women, and children have one thing in common; they are all FIGHTERS. I’ve been deeply touched and humbled by the stories of the people I’ve met in the last year – with all types of EDS. Their stren...Thank you in advanc...

3

About EDS | Coming Unglued

https://ddvaughan.wordpress.com/ehlers-danlos-syndrome

The EDS Online Survey. Is a group of connective tissue disorders, all of which result from genetic defects in collagen production. There are 13 types of collagen in our bodies – all affecting different parts and systems. The types of Ehlers-Danlos Syndrome are broken down according to symptoms and also by the gene involved in causing the collagen deficiency. EDS Type I and II. Smooth, velvety skin. Complications from joint hypermobility. Muscle hypotonia, delayed gross motor development. Thin, translucen...

4

96203_Emily___Mom_20091011_display | Coming Unglued

https://ddvaughan.wordpress.com/2010/11/14/emilys-hope-a-lesson-for-us-all/96203_emily___mom_20091011_display

The EDS Online Survey. Emily’s Hope: A Lesson for Us All. Raquo; 96203 Emily Mom 20091011 display. 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). You are commenting using your WordPress.com account. ( Log Out. You are commenting using your Twitter account. ( Log Out. You are commenting using your Facebook account. ( Log Out. You are commenting using your Google account. ( Log Out. Notify me of new comments via email.

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Research | Coming Unglued

https://ddvaughan.wordpress.com/hope

The EDS Online Survey. These are just some of the researchers (a.k.a. heroes) who are hard at work on projects that could greatly impact families with EDS and other related connective tissue disorders. If you haven’t already figured it out, it’s up to each of us to stay informed of the latest information and make sure we get it into the hands of those taking care of us or our loved ones. Dr Hal Dietz, Jo. Click to learn more about this project. It not only drastically shortens the length of life, but als...

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Where do blogs come from? | The Dog is a Gentleman

https://jfairchild3.wordpress.com/2014/03/15/where-do-blogs-come-from

The Dog is a Gentleman. A bit about me:. Where do blogs come from? March 15, 2014. Sure, I read blogs. But until today I really didn’t know where they came from. I’m pretty shaky on the basics but I’ve never let that stop me before, have I? So, despite the title of my first post, I can assuredly tell you that I am unqualified to answer the question “where do blogs come from? Not that you care… yet. Share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Notify me of new ...

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transballad: Ugh. Ugh.

http://transballad.blogspot.com/2013/01/ugh-ugh.html

Poetry, professorial ambitions and collagenopathy. Wednesday, January 16, 2013. I'm not as good at denial as my parents, although I'm still pretty good. Ignore it, maybe it'll go away. I dragged through the holidays, barely getting out of my pajamas. I slept in the basement so I wouldn't keep my sister up because I'd stopped sleeping though the night long ago. It's like, what, the constipation, urinary retention, tachycardia, low blood pressure, nausea, vomiting and months-long headache weren't enough?

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transballad: My first video blog!

http://transballad.blogspot.com/2012/11/my-first-video-blog.html

Poetry, professorial ambitions and collagenopathy. Sunday, November 11, 2012. My first video blog! I am so sorry you are going through this pain without the support that you need from your doctors. I hope that you get answers and treatment soon and that in the meantime you manage to stay as peaceful and hopeful as you can. I too have EDS and am starting to deal with regular severe headaches. It is overwhelming to have yet another symptom added to the pile. Sending love from Scotland,. My Life with EDS.

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jfairchild3 | The Dog is a Gentleman

https://jfairchild3.wordpress.com/author/jfairchild3

The Dog is a Gentleman. A bit about me:. Moving From “I can’t” to “I don’t know how”and Other Panic-Inducing Topics. February 2, 2017. When mom died in 2007, I discovered that the shower was the place I could let myself cry and think and process my emotions, so that I could be strong for dad while he learned to navigate life without her; but now, faced with what seemed like impossible choices and no alternatives, my shower became the place I would go to have full-out panic attacks. With patience, he help...

edstoday.org edstoday.org

Vascular

http://edstoday.org/what/types/vascular

August 24, 2016. Awareness Education Support Research. EDS – Myths and Facts. Real Faces of EDS. David Daniel Bowen III. Clinical Trials and Research. Vascular Ehlers-Danlos Syndrome (vEDS). Vascular Ehlers-Danlos Syndrome ( v. Is a dominantly inherited, life-threatening connective tissue disorder which results from mutations in the COL3A1. Arteries and veins that are rich in type III collagen. Vascular Type EDS is caused by structural defects in the proa` 1 (III) chain of collagen type III encodes by CO...

edstoday.org edstoday.org

Associated Disorders

http://edstoday.org/eds-awareness/associated-disorders

August 24, 2016. Awareness Education Support Research. EDS – Myths and Facts. Real Faces of EDS. David Daniel Bowen III. Clinical Trials and Research. Postural Orthostatic Tachycardia Syndrome (POTS). Phil Fischer, M.D Bravo, thank you for the great awareness video. Dysautonomia and vascular abnormalities. CSF Think Tank: The Experts Speak. The Chiari and Syringomyelia Foundation. Dysautonomia and Postural Orthostatic Tachycardia. Dr Peter Rowe, Professor at Johns Hopkins Children’s Center. Falkland Isla...

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Dermatosparaxis

http://edstoday.org/what/types/dermatosparaxis

August 24, 2016. Awareness Education Support Research. EDS – Myths and Facts. Real Faces of EDS. David Daniel Bowen III. Clinical Trials and Research. Individuals demonstrate severe skin fragility and bruising. Wound healing is not impaired and the scars are not atrophic, skin texture is soft and doughy. Sagging, redundant skin is evident. The redundancy of facial skin results in an appearance resembling cutis laxa. Large hernias (umbilical, inguinal) may also be seen. Mays Landing, NJ 08330.

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A bit about me: | The Dog is a Gentleman

https://jfairchild3.wordpress.com/about

The Dog is a Gentleman. A bit about me:. A bit about me:. I’m an eternal optimist. I like to think I’m an all around nice guy, but most days I find myself alternating somewhere between the extremes of being a selfish asshole and the most generous person you’ll ever know. Maybe I’m manic; or maybe as a Libra, it’s just my nature to try to balance my worst traits with my best. 8230;but enough about me, let’s talk about you, what do you think about me? Share on Facebook (Opens in new window). Having met the...

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Coming Unglued | facing life with Ehlers-Danlos Syndrome

The EDS Online Survey. Emily’s Hope: A Lesson for Us All. November 14, 2010. The WHOLE WIDE WORLD. There isn’t a single shred of self-pity or cynicism in the story that she tells, and in an instant I was acutely aware of my own petty, ridiculous list of complaints. Yes, I’d lost a husband to this awful disease; and yes, I’m fighting for my own son’s life in. Real hope on the other hand, is another matter altogether. It is a precious, rare, and fragile thing;. It is a gamble on getting hurt-. I suppose th...

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