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What is EDS (Ehlers Danlos Syndrome)?

Ehlers–Danlos Syndrome (EDS) is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes. (This is the collagen of granulation tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Reticular fiber. Also found in artery walls, skin, intestines and the uterus.–COL3A1).

The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. The severity of the mutation can be life-threatening, but many EDS patients die from other complications caused by the illness. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage.   As Desrcibed by Wikipedia.

Why do you refer to yourself as a ZEBRA?

“When you hear hoofbeats, think horses, not zebras.” 

This is what doctors are taught in medical school so often patients with EDS are not diagnosed early enough or at all.

For a more thorough explanation check out THIS website.

What are the SPOONS you refer to in your post?

The Spoon Theory

Please check out the original story/explanation at

by Christine Miserandino www.butyoudontlooksick.com

She does an awesome job explaining what anyone with an invisible illness goes through each and everyday.

How do I sumbit ideas, suggestions, tools, testimonials, personal stories, tools, photos or questions?

You may currently submit all items to [email protected]

Please keep in mind this is a family website and will be treated as such.  No inappropriate language, terminology or questions will be shared and may be deleted.  This website was created to edify, encourage and suggest adaptations to those with physical challenges that make everyday tasks difficult.

Please keep in mind that I do sruggle with EDS and some days may be unable to keep up with the website but most items will be responded to within 1-5 business days.

CAN I SHARE OR SUBMIT YOUR POSTS AND IDEAS?

Please, please, please do!

We want to encourage everyone we can to contribute ideas and learn ways to work around any physical challenges they might have.  If we can help one person avoid pain and discomfort by  offering an alternative method or helpful tool then our day has been made.

We simply ask that you include a link back to our website and use a section or quote from our blog, not the post in its entirety.

HOW CAN I RECEIVE REGULAR UPDATES FROM THE ZIPPY ZEBRA?

On Facebook: By liking our PAGE on the right hand side of your screen.

Through Email: By signing up on the right hand side of our page.

We will soon be on Twitter, Instagram and other social media.

 

 

 



4 Comments

  • By Amanda, October 1, 2014 @ 2:50 pm

    I love your site and will be adding it to my blog.

  • By TinaMiller, October 7, 2014 @ 10:12 am

    Thanks Amanda. We should be getting the links for additional blogs up over the weekend and will offer link back there. Please feel free to suggest another blogs that would be beneficial to our group. 🙂

    Remember linky parties start the first Wednesday in November (if I can get it all figured out)

Other Links to this Post

  1. The Zippy Zebra » Real Life Story #7- Christal’s Journey to Diagnosis — March 12, 2015 @ 8:01 am

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