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May is Ehlers-Danlos Awareness month- and while I lack the organisation to post something every day in line with the Instagram prompts issued by the Ehlers Danlos Society, I’m still committing to sharing my story. This month I’ll be working on an EDS-specific version of my AC/GT Wrap pattern made with beautiful Mad Scientist Yarns in a black and white speckle reminiscent of Zebras (the Ehlers Danlos mascot). If you’re after the same yarn to make this shawl with me then check out this link.
If you’re a regular reader of my blog then you’ll see I don’t shy away from posting about my journey with EDS. Its been an obstacle that has affected my whole life since being diagnosed at 19. In fact, it was a big driver for designing the AC/GT Wrap with its DNA-inspired stitch pattern.
This month, use code ZEBRA in the store, on Etsy, or on Ravelry for 25% off any digital or physical copy of the AC/GT Wrap pattern – regardless of the language. I’d love it if you could crochet along with me!
There are 14 types of Ehlers-Danlos syndromes, as outlined by the cool infographic below. It’s a group of hereditary disorders, affecting connective tissue that, in turn, affects the skin, joints, blood vessels, gut, and many other organs and tissues. These disorders arise because of abnormal production and function of collagen and allied connective tissue proteins. Following a trip to the opticians, I was finally given a diagnosis of Vascular EDS, with an element of hypermobility, that solved the mystery of my aches and pains and various other ailments over the years.
While my Instagram post above, will tell you a little bit about my initial diagnosis, a thought piece I wrote for the Ehlers-Danlos Loose Connections magazine probably gives a little more detailed insight into my condition. Read it on Page 21 here. Basically – it’s a minefield! Every time I have some kind of niggle or new sickness, my Google searches look like this: “Ehlers Danlos and [Insert New Symptom here]”. You can honestly drive yourself crazy!
Right now, I have been hospitalised more times than I can count. Either from my 17 kidney stones (for which I now use a Hurricane naming system to keep track of), or for my heart, eyes, gastrointestinal issues (doctor says I have a really ‘gurgly’ bowel), and my joints. Flat feet are the latest development for me and after 2 years on a waitlist, I finally have orthotics to help ease the sensation of walking on glass.
Growing up was hard. If you read my post here then you’ll have had a little glimpse into how difficult it was for me being branded a liar by my teachers. Up until age 19 I was made to believe I was lazy, unmotivated and making things up because no one could fathom the fact I could be in pain or have something genuinely wrong with me.
Unfortunately, this is the case for too many diagnosed, and undiagnosed, members of the Ehlers-Danlos family. So while months like Ehlers-Danlos Awareness Month might just seem like some kind of Instagram marketing ploy, they do a world of wonder for people like myself, who have spent their lives trying to convince people to take them seriously.
Ehlers-Danlos isn’t easy to identify. Its rare, and symptoms differ in severity and type from patient to patient. I, myself, am fortunate that I can still function as many would see to be ‘normal’. But there are others more unfortunate out there than myself, and I consider myself one of the lucky few.
So while I don’t expect you to read up an encyclopedia’s worth of information, I think the most important message this month, that I have re-iterated many times on my blog, Instagram, and in my day-to-day life is this: Be Kind. You never know what someone is going through- particularly if they have an invisible illness like mine.
For more information and support, please visit the Ehlers-Danlos Society website, and please consider donating to their research cause.
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