Rare Disease Day Is Over; My Ehlers-Danlos Syndrome Is Not


Rare disease day was a few days ago, but my rare disease didn’t get the message! February 28th was Rare Disease Day. One of my conditions, hypermobile Ehlers-Danlos syndrome (hEDS), is considered “rare” in the medical community. I spent the morning dragging myself around the local town center to buy some essentials for my pet rabbit then spent the afternoon sleeping. Such is life with a chronic illness!

Today is not Rare Disease Day. I wish my hEDS would get the message and stop celebrating! This morning it greeted me with three unstable joints, body pain throughout, nausea and just a general feeling of rubbish.

I sit in my lounge surrounded by chaos. I am physically too weak to tidy up the piles needing “sorting out” that I started when I was feeling better. The kitchen is getting in a mess. The floors need vacuuming. I need to contact my pet insurance and let them know my rabbit passed away two weeks ago (triggering this latest pain flare). I just can’t.

Rare Disease Day is great, as it raises much-needed awareness for loads of rare conditions; however, for the majority of people the day ends and their life goes back to normal. The articles, memes and various other awareness campaigns that filled my Facebook newsfeed have trickled down until there are none left. For another year, most people can safely forget about rare diseases.

I – and the millions of people with these various rare diseases – cannot. We live this day in, day out. On Rare Disease Day our tales of how we are affected by our conditions are celebrated, shared and noticed. Every other day people accuse us of “whining” or “attention-seeking.” My hEDS won’t vanish overnight like people’s interest in rare diseases. I wish it would!

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Image via Rare Disease Day Facebook page.


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