Surviving and Thriving with Chronic Illness

Archives 2013

Video Results

Video: Best Spoonie Art Contest!

DEADLINE EXTENDED TO SEPT 30! All "bugs" on forum are now fixed! Yeah! So, if you are a creative spoonie, please join us in our "Best Spoonie Art Contest"! You can enter on the forum at In this video, Dr. Diana discusses how this will work. Any and all art, music, writing, etc is acceptable, as long as a spoonie (chronically ill patient) has made it! Deadline is the end of Sept, 2013. Don't miss the fun! wink In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS 88 Comments | View

Video: EDS patients should not have LASIK! Ortho-K is a great option!

EDS patients are not candidates for surgical correction (such as LASIK) for myopia (near-sightedness), astigmatism or hyperopia (far-sightedness). Ortho-K is a great option and can even slow or halt the progression of near-sightedness in children. The patients wear a lens only at night-time and are free of contacts or glasses during the day. Yes, this is my hubby speaking on this It's awesome to have options, when we are often not candidates for surgeries as EDS patients. In: Ehlers-Danlos 22 Comments | View

Resource Results

Should dysautonomia patients get the flu vaccine?

It’s a tough call for many of us—should dysautonomia patients get the flu vaccine? We often times will flare with symptoms after the vaccine, but is the flare worse than the flare we’d experience with the flu? It’s a decision each one of us grapples with every year! Here’s an abstract concerning this tendency to flare.

View | Articles & Hand-outs

New gene found for EDS!

Yet another new gene found for EDS! It’s name? B3GALT6 (kinda’ catchy!)

View | Articles & Hand-outs

EDS Hypermobility type may be the same as TNX deficiency?

MUST READ article explaining how TNX deficiency may account for most of the Hypermobility forms of EDS! Better yet? This deficiency can actually be beneficial to the heart!

View | Articles & Hand-outs

A case of EDS and recurrent venous thrombosis—ONE CASE?

A case of venous thrombosis in EDS. ONE CASE, Dr. Diana asks. Her research is showing a high prevalence of venous thromboses in EDS patients, even without genetic abnormalities of clotting.

View | Articles & Hand-outs Take a look!

Angel Lucas (fellow EDSer and Spoonie) and her husband are creating this awesome map of EDSers and where they live! They have much more in store for this site, and your registration can be as confidential as you would like. Please take a look and consider registering! It looks amazing so far!

Online Resources

Potsie Mama

Great blog about POTS, EDS and family…making it all work!

Online Resources

Product Results

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