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posterchild

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I am hereby declaring myself the posterchild (woman? lady? Posterlady?) of Gitelman Syndrome.

What the deuce is Gitelman Syndrome, you ask? Well friends, it’s a kidney disorder and frankly, one that need a sexier name if we are ever to make progress towards curing it, or at the very least giving it’s sufferers $250,000 for the injustice (the injustice!) of it all.

In medical jargon, Gitelman Syndrome is a rare inherited autosomal-recessive disorder affecting the distal convoluted tubles of the kidneys, resulting in hypokalemia and hypomagnesemia.

In laymans terms, I can blame my parents and a freak roll of the genetic dice for giving me kidneys with a defective part, one that wastes Magnesium and Potassium instead of keeping them. These are, in case you didn’t know, pretty important minerals, responsible for muscle development, mood, and energy levels among other things. OH, and ensuring that your heart keeps beating…yeah, THAT.

The picture at the top is what happens when either I a) don’t take my medication properly, every single day, or b) drink excessively, sweat excessively, get too stressed out, eat too much black licorice (It wastes potassium, didn’t you know dear?) and sometimes for no good reason, just because.

In my day-to-day life this condition mostly just means that I take 12-20 pills a day and usually feel really, really tired. Which really isn’t terrible in the grand scheme of things, but it can be disheartening because I find myself in an odd spot. On one hand, I don’t want to be constantly thought of as ill, or deficient in some way. On the other hand, the utter invisibility of this illness can sometimes make it hard for others, (and for me, if I’m honest) to remember that I am living with 50-75% of the energy that a normal person has, and that this simple fact affects literally every aspect of who I am, and what I am able to accomplish.

The reason I am writing this post is because this tiny defective kidney tubule has affected my life more than I initially thought it would and thus it will, occasionally affect what I write here. I also hope that, given it’s relative rarity (only 6000 people have this condition in North America) this can help one or two people who may be googling “What the fuck is Gitelman Syndrome?” and are scared and ill-informed about what is happening to their bodies, their energy levels, their memories.

I can’t even explain how unsettling it is to arrive at the ER and have to instruct the doctor what medication to give you, to see her frantically web-searching your condition, trying to understand why you can’t open your hands or coherently express yourself.

Having said all of that, I am very, very grateful that this disorder has a treatment, as many others aren’t so fortunate, and although it can be frustrating to take so many pills every day (especially the ones that have a sharp, bitter peppermint taste and especially the giant ones that start disintegrating the moment they hit my tongue, so I am swallowing -a la Alanis- a gag-inducing, jagged not-so-little pill) at least there ARE pills. And at least I am in Canada where they cost me only $60 a month, instead of the hundreds they would if I didn’t have healthcare.

And at least if I commit a crime in Texas and am given the death penalty and have a lethal injection , it won’t kill me because, guys, I get IV’s of that shit all the time and it ONLY MAKES ME STRONGER.

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12 Comments

  • Reply Lara Mealor November 17, 2013 at 5:36 PM

    I must say You make a mighty fine poster child! You are so funny and full of life. Great to see such a a feisty spirit. Love your blog.

  • Reply Sweet Madeleine January 5, 2014 at 2:39 PM

    […] toilet was actually in the security room of the hospital, which is where I landed due to my chronic kidney issues. The ER was pretty busy so they took my bed and bumped me to the vacant security room where I got […]

  • Reply Let me explain | Sweet Madeleine March 12, 2014 at 12:03 AM

    […] so I made the best choice I could and I went to the pharmacy to pick up more medication for my kidney condition (stress causes low magnesium, low magnesium makes a person crazy). And then I sat in the parking […]

  • Reply Leanne July 10, 2014 at 6:45 AM

    I found this by searching Gitelman’s Syndrome becuase we have recently been informed that my 5 year old daughter has it. Never felt so alone in my life with no one else to talk to about this and so many concerns for what her life holds for her in the future with Gitelman’s. Leanne x

    • Reply sweetmadeleine July 10, 2014 at 9:04 AM

      Leanne, I wish I could hug you! If you have ANY questions, or just want to speak with someone who understands, please don’t hesitate to contact me at info(at)sweetmadeleine(dot)ca.
      It’s terrifying to hear that your child is sick but I promise she will be fine.

      Xoxo
      Madeleine

      • Reply Leanne July 11, 2014 at 3:00 PM

        That’s so sweet Madeleine!! Thank you! It means a lot to me that you’d offer to answer any questions or just to talk. I will keep that in mind. I do hope my daughter will be ok, I’ve actually started a blog myself on our journey through diagnosis etc but its great to see someone like you who Gitelman’s do so well in life and having a child too. I worry about these things for my daughter. But thanks for taking the time to reply!! Leanne xx

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  • Reply Toddler Wisdom: How to Avoid Toy Store Tantrums – Sweet Madeleine April 26, 2015 at 10:01 PM

    […] also exhausting. I have a chronic kidney condition which leaves me running at 50-75% of the energy of a typical person, so statements like this […]

  • Reply The Recipe - Sweet Madeleine July 4, 2015 at 12:01 PM

    […] morning,  Lizzie and I headed out for a Nephrologist appointment. She has the same kidney disorder that I do,  and I was tagging along to her appointment in the hopes that I could meet her doctor […]

  • Reply Flight - Sweet Madeleine July 20, 2015 at 1:28 PM

    […] in my neck and my shoulders and, especially, my kidneys. One of the biggest triggers for my kidney condition is stress. In some ways, things have been getting easier and easier as the months have passed, it […]

  • Reply Q&A - Sweet Madeleine September 6, 2016 at 2:18 PM

    […] general health is great, but I think this question likely refers to my kidney condition, and although it’s manageable, I do feel like it’s getting progressively worse as I get […]

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