EDS Awareness Month

🦓 I am joining the EDS Awareness Month Challenge – May 2020.


Day 01: Meet Me! – I am Cass! I’m 27 years young, a mama to an 1.5 year old son, Griffin, and a wife (& best friend) to @calebrobnson. I live in Austin, Texas and work in a laboratory as a clinical research assistant and have spent the past month working with microbes to test the efficacy of preservatives in cosmetic products. I graduated in 2017 from Texas Tech with a degree in biology. (Wreck’ Em). My favorite past time is Netflix and Paint. I love doing custom work to create artwork for nurseries. I am a pug and sphynx mama and my fur (& furless) children bring me so much joy. My husband and I go hard at Modern Warfare (gamer tag: motherpuggy) – we play on the weekends and evening when I have energy. My favorite things besides my babies, are Diet Coke, pad thai, sour candy, burritos, tiny houses, modern interior design, tattoos, Harry Potter (and all other geeky series) and scary movies. I have Ehler’s Danlos Syndrome along with comorbidities of Chiari Malformation (brain surgery in 2015), Mast Cell Activation Disorder, and Undiagnosed GI & autonomic issues. I live with chronic debilitating pain in my neck, back, and knees and suffer from frequent dislocations. Despite my conditions and prognosis, I still have a fighting spirit and aim at being the best mom I can be. 💄


Some fun facts about me: I’ve lost about one-hundred pounds since 2013, my husband and I met and got married within two months of knowing each other, & I grew up as a military brat and lived in several different places including Cuba!

EDS

This past week has been an especially difficult one. I worked Monday thru Friday, which as a part time employee is a rarity. Getting through the week is an achievement for me with the much needed reward of a weekend of rest (for the most part, minus chores). I talked to my NS and it has been concluded that I need to have genetic testing done to determine if I have any underlying conditions. One suspect in mind is Ehlers-Danlos Syndrome.

Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.

U.S. National Library of Medicine

After talking at length with several members of my Chiari support group, it was suggested that I may be suffering from Ehlers-Danlos Syndrome (EDS) and that my Chiari might actually be a secondary condition caused by the EDS. I have suffered from frequent dislocations and sprains since the age of ten without much of answer as why. I have hypermobility of my joints and my skin has always been very smooth, but I generally develop keloids when healing from surgical incisions.

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(source)

One condition that EDS can cause is Craniocervical Instability (CCI), or the instability of the craniocervical junction due to the lack of connective tissue support. The condition mainly occurs from repetitive stretch injuries of the neck (which can cause Chiari Malformation, nerve dysfunction, thickened odontoid capsule, retroflexed odontoid, and cranial settling [source]). Unfortunately EDS can only be managed and there are no definite treatments. CCI, however, may be helped drastically with a craniocervical fusion where the skull would be pulled upward into the correct position.

I’m not sure what the future holds for me. I have an appointment with the rheumatologist for additional testing on July 18th and I will be tested for EDS along with other rheumatic diseases to see why I am having this chronic pain. For now, I am back to wearing a soft cervical collar when I am not at work. It’s not the most fashionable of things, but it does provide a bit of relief. If you have to wear a cervical collar, too, you might want to try a collar to snazz your look up.

xo,

Cass