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Category: Life Hacks

Applying for Disability Benefits with Ehlers Danlos Syndrome & Other Hypermobility Related Disorders

***Guest post was written by Disability Help and originally shared on EDS Wellness. Medical content & information on Ehlers-Danlos syndromes, hypermobility disorders, and related conditions by EDS Wellness. Article is reshared with permission.*** Ehlers-Danlos syndromes are a group of heritable connective tissue disorders that are caused by various genetic defects, typically in the collagen protein used to make our connective tissues, but sometimes in other connective tissue components. It is believed that both genetic and epigenetic mutations — both to the structure or function of collagen — play a role in the various types of Ehlers-Danlos syndromes. These disorders...

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Trust Your Intuition and Be Your Own Advocate

****Guest post by Kendra Fletcher. Kendra does not have EDS or HSD, but her story and information about preparing for her doctor’s appointment are helpful for anyone who is living with a chronic illness, or who is struggling with an undiagnosed health condition.*** “YOU are a major contributor to your healthcare team.  One thing I’ve learned is that you can’t give up all of your power to doctors, professionals, experts, etc. Yes, you should seek their advice.  Yes, they are experienced and knowledgeable.  Yes, they add value and have expertise.  However, if you’re feeling that something is “off” or...

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Wednesday is a big day! The 2017 EDS Diagnostic Criteria will be Published!

Wednesday, March 15th, 2017 is the day that the highly anticipated newly updated EDS diagnostic criteria will be released. The Ehlers-Danlos Society is holding a webinar in the morning at 9:30 am; however, it’s reached capacity. I will be listening in along with everyone else on the webinar. I was also graciously asked to help moderate a live Q&A session in the EDS Life Hacks group on Facebook at 4 pm EST on Wednesday afternoon. Our regularly scheduled “Just 5 Minutes” class will be held at 2:30 pm EST and then I will be live via video stream in...

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EDS Wellness’ HelpLine is Live and Open for Appointments and Emails!

Download the EDS Wellness App today! Who is EDS Wellness? EDS Wellness is a 501(c)(3) nonprofit organization promoting health education, integrative healthcare, and wellness strategies for living well with hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS), connective tissue diseases, and related comorbidities.   1. The EDS Wellness HelpLine is live! You can schedule 15-minute phone appointments, or send an email to Direct link to HelpLine appointment scheduling – See original post announcing the EDS Wellness HelpLine by going to 2. EDS Wellness has an App! Now available through iTunes or Google Play! Link to EDS Wellness...

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The Floor is the Best Desk 

Only when you are hypermobile, does the floor become your desk. It’s way more comfortable than sitting in a chair at a desk, or sitting at all. At least, I can move around and also perform PT exercises while I work.  Notice the scapula support by Braceability – I finally gave into wearing something to help rounded, hypermobile shoulders while I’m working on the computer.  Neck position is key though. You want to keep your neck long and aligned, and eyes cast down, versus your neck tilted/hyperextended to allow your eyes to look up at the computer...

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Move More. Move Better.: Moving Naturally with Hypermobility

#EDSFitTip – the Hip Hinge

#EDSFitTip – the Hip Hinge

(Top left pic is proper form for hip hinge – others are examples of going too far) The “hip hinge” is the perfect natural movement exercise that can be done easily. The point is to feel and learn how to engage the muscles that attach to your pelvis/SI joint and knees and to help prevent […]

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Mast Cell Research: Mast Cell Research

‘Twenty Minutes’ by Karen Smith-Will – Winner of Our Team Taylor/Mast Cell Awareness Tank & Mast Cell Story Giveaway!

‘Twenty Minutes’ by Karen Smith-Will – Winner of Our Team Taylor/Mast Cell Awareness Tank & Mast Cell Story Giveaway!

Thank you to everyone who participated in the Mast Cell Research ‘Team Taylor/Mast Cell Awareness Tank & Mast Cell Story Giveaway!’ We are excited to announce that our winner, chosen at random, is Karen Smith- Will! Karen’s story ‘Twenty Minutes’ is shared below. “I coughed before the first song. That doesn’t bode well. Not surprising, but […]