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Raising Awareness for EDS

Capricious dons a mask of zebra stripes to raise awareness for Ehlers-Danlos Syndrome

Hello my beloved spoonie readers! I’m a bit behind on this given our move, my downtime necessary to recover and another emergency with our poor kitty Loki (another infection), but at least I made it by mid-month-ish in perfect zebra style. What can I say? We have to be flexible in more ways than our joints!

I am posting this video on all my social media sites, because I’m dedicated to helping our society help patients like me. Below is my video challenge to every person who reads this:

Like the video says, I’m challenging you to either donate a minimum of $3 to the Ehlers-Danlos Society for EDS Awareness month and/or make your own video or post about Ehler-Danlos Syndrome to spread awareness of this “rare” genetic disorder. You’ll be helping the society do all the great things they do for us and more, since they will have more funds.

Ehlers-Danlos Syndrome is a rare genetic condition which affects the body’s ability to produce collagen properly. Collagen is one of the body’s most abundant proteins, so when collagen is faulty, just about anything can go wrong. We may be known for our ultra-bendy (double-jointed) ways and stretchy skin, but there is no end to the havoc it can wreak when it goes unchecked. It is believed that millions of people are suffering this condition without diagnosis or help. To learn more about how this disorder affects people, visit this post: What is Ehlers-Danlos Syndrome

Our society is international and they help patients around the globe by educating them on how to properly care for EDS and their many comorbid conditions. They also educate doctors so that more people will be properly diagnosed and sponsor some amazing research to forward our understanding and treatment of the disease. And that’s just a few things they do.

Many of us would be lost without our society. To learn more and give, follow this link:

As always, thanks for reading and supporting our personal efforts to help reach the undiagnosed and thank you for donating and/or raising awareness for this condition.

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Autonomic Dysfunction in EDS

Editor’s Note: This post was last checked and updated on 4/14/19. Thank you.

Dr. Alan Pocinki discusses the Evaluation and Management of Autonomic Dysfunction in EDS in this presentation given at the 2017 Ehlers-Danlos Society Global Learning Conference held in Las Vegas.

For the presentation slides, go here.

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Mast Cell Activation Disorders

family interacting tree

Editor’s Note: This post was reviewed for accuracy on 4/22/19. Thank you..

In this presentation from the 2017 Ehlers-Danlos Society Global Learning Conference, Dr. Anne Maitland discusses Mast Cell activation disorders such as mast cell activation syndrome (MCAS), Mastocytosis, histamine intolerance, interstitial cystitis, multiple chemical sensitivity and how they present in Ehlers-Danlos Syndrome.

You can access the slides from this presentation, here.

For more information on mast cell activation syndrome and disorders, check out these links exclusively from the Zebra Pit:

MCAS, Mast Cell Activation Disorders, Ehlers Danlos Society

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Diet and Supplementation for Persons w/ EDS

Editor’s Note: This post was last reviewed for accuracy and updated on 4/16/19. Thank you.

Dr. Heidi Collins discusses diet and supplementation in persons with Ehlers-Danlos Syndrome in this presentation from the 2017 Ehlers-Danlos Society Global Learning Conference held this year in Las Vegas.

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To see the slides from this presentation, go here.

Diet and Supplementation in EDS Pin1