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Living with Classical Ehlers-Danlos syndrome – Sara Geurts’ Story about “Loving [her] Skin”

by EDS Wellness | Jul 1, 2017 | Invisible Illness, Living with EDS | 0 comments We first shared Sara’s story, ‘#EFFYourBeautyStandards Sara Geurts’; Living with Classical Ehlers-Danlos syndrome (CEDS),’ last year. Sara’s incredible journey about living with Classical Ehlers-Danlos syndrome (cEDS) has continued to travel around the world — inspiring all who read her story. Recently, Strength/Flexbility/Health/EDS shared a different version of Sara’s story — written in April 2016 specifically for the relaunch of its website, newly redesigned, to best support its founding purpose of serving as a digital magazine for those living with Ehlers-Danlos syndromes (EDS), Hypermobility Spectrum Disorders (HSD) and related conditions. Strength/Flexibility/Health/EDS’s articles and content focus on helping those living with EDS, HSD and their comorbid conditions, understand the latest medical, movement, nutrition, and wellness-related information pertaining to the conditions that they live with every day. Strength/Flexibility/Health/EDS’ primary goal is to share health education, wellness strategies, life hacks, patient stories, and resources for living well — ‘strength, flexibility, and health while living with EDS.’

An excerpt of Sara’s story titled, ‘Loving My Skin,’ published on Strength/Flexibility/Health/EDS on June 25th, 2017 is below:

“There’s not really a specific place to start, so we’ll just jump right in.

I’ll start out by saying, I was not always comfortable or accepting of my disorder, and the effects it had on my everyday life.

I had been diagnosed around the age of 10 but had noticed my skin as early as the age of 7 or 8. Once I had been diagnosed, one of my sisters had also been diagnosed with Diabetes. Given this was in the 00’s and the lack of information we had was not nearly what it is now, my sister’s circumstance took the upper hand within my family.

This was fine, as at the time I was not noticing anything super peculiar, or out of the “norm” pertaining to my EDS.

As I started to get older, I had heard stories of other individuals suffering from EDS, and having barely any physical discrepancies, but impacting the inside of us more than the outside. This to me was shocking, as my type was not “hidden” or “invisible” but completely opposite, being more than visible, and very evident. My outside discrepancies would have included the easy bruising, soft skin, scarring, and the “stretchy skin”.

Read Sara’s full story here. A recent video sharing her story is viewable below.

