Get it together LEGS!

Anyone have that one drunken uncle that stumbles home at 3 am looking like a newborn fawn? Well my legs were absolutely that guy in a past life, though my Dr calls it Episodic Ataxia.




It's Feb 28th  Rare Disease Day and while I have a few rare conditions I could talk about, I wanted to take a few moments to talk about Episodic Ataxia. I've spent the last 10+ years in the online chronic illness community and until being diagnosed last October Id never even heard of Ataxia, nobody seemed to be talking about it. Because its rare and definitely needs some awareness.



I now know there are many types of Ataxia, its a genetic disorder that effects your central nervous system. Causing poor coordination, balance issues, dizziness, slurred speech and more. There is currently no cure but there are a few treatment options.

I was diagnosed in 2018 but have been struggling for years with this "Drunken sailor" situation, at first thinking I was just clumsy which I have indeed always been. I'm a downright menace to myself. But when id get waves of sudden instability I suspected it was something more.
Nothing like a morning bathroom trip and managing to hit every wall and door frame in the hall on the way in then damn near falling off the toilet to convince you that your body went on a drunken binder while you were asleep.

I mean get it together legs, I think amidst the often accompanying confusion. These ataxia episodes come with little warning adding that extra little slice of "excitement" to my life. Most times they don't last longer then a few mins and on occasion only seconds, but a few seconds of noodle legs while ascending the stairs can really be living on the wild side.




So I use a cane when I need to and I even customized mine top to bottom with sparkling blue rhinestones, because ya girl is not going to do her best rendition of Bambi on ice without looking fabulous, I also use a walker on bad days with a seat which is very grandma chic. Point being my rare conditions sometimes take me down but I don't let them keep me down. I intend to keep moving forward even if I look like a wineo at last call on occasion.

All joking aside there are over 7000 rare diseases in the world, 1 in 17 people will be affected by one at some point in their lives so I hope that #rarediseaseday brings awareness to the many people that are living with or know someone who is living with a rare disease. I also hope I shed a little light on Ataxia and if im lucky made you chuckle along the way, Do you have a rare condition? or know someone who does? Feel free to share your experience in the comments Id love to read them.

If you'd like to see a small clip of me in ataxia shuffle you can find one on my Instagram @Chronicallyilectra

-Gwen

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