Archive for the ‘Kiddos’ Category

While inpatient with mitochondrial disease, you’re often an enigma. Most of the health professionals have either never heard of this disease or might vaguely remember it being mentioned back in medical school. And those who have heard of it often have misconceptions (e.g. “all people with mito have some sort of mental delays/retardation” or “mito only affects infants and toddlers”). That’s why I make each and every admission a chance to educate about mitochondrial disease.

Because it’s a complex disease and involves “difficult” vocabulary, it’s easier to describe with analogies. Usually we use the “my batteries don’t work efficiently” analogy, but there are so many other ways to look at the disease. Recently, Chuck Mohan, the CEO of the United Mitochondrial Disease Foundation, made an extensive list of other ways to describe mitochondrial disease. Because it might just help one new person understand it, I’m going to share his list here:

Mitochondrial Disease is like:

  • Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
  • Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
  • Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses.
  • That dream you have where you are trying to run away from danger but you just can’t move? Yep, that’s mitochondrial disease.
  • The way you feel after running a 50 yard dash compared to the way you feel after running a 50 yard dash with a 50 pound knapsack on your back.
  • The way you feel after working an 18 hour day or 18 days without a day off. Well, if you had a mitochondrial disease you’d probably feel that way after breakfast.
  • Buying a perfectly good Volkswagen Beetle with a 110 horsepower engine. It’s a great looking car and it runs terrific. Now take out a ring, gum up the valves, add some sugar to the gas tank and put in an old head gasket. The car still looks great but now it will only generate about 50 horsepower. That will get the Volkswagen around the flat streets of Kansas on a spring day, but now load it up with 3 of your hefty friends, or more if they’ll fit, with a trunk full of luggage and take it to the hills of Western Pennsylvania on a 90’ day. It won’t make it! But it still looks great!

For more from Chuck Mohan, go to umdfblog.com.

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Today is Purple Day. And what is that, you may ask? Purple day is in support of Epilepsy Awareness.

Wear Purple for Epilepsy Awareness!

And in honor of this day, I have a special treat.


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[This is Part 3 of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Today’s blog is brought to you by the Letter “W.” Yep, we’re going to talk about the Who, What, Where, When, and ever-important Why involved in the use feeding tubes. There are tons of types tubes and even more reasons why an individual might get one. So I’m going to give you and general overview of the primary classes of tubes. I know everyone who has a tube, or “tubie,” has gotten those looks and questions. Truth is: most people don’t see tubes everyday; they may be curious, weirded out, or even afraid of them. When I first got my GJ tube, my nephew – the sweetest, most empathetic kid you’ll meet – was so incredibly gentle with me. I think he thought he was going to break me by giving me a hug. It took him a while to warm up to it and we talked a ton about it, but I’ve got those bear hugs back.

Tubes aren’t something to be scared of. Tubes don’t necessarily equate to loss of freedom and worsening of disease. In fact, feeding tubes prevent the progression of disease! And I have more freedom with my feeds and infusions than I have had in years. There are very few people that I know with tubies who don’t feel the same.

So let’s get rid of all the stigmas attached to tubes and take a journey with some of my incredible friends who just happen to also have tubes…

I want to issue the same warning I did yesterday: there are some pictures in this post of medical interventions; if this makes you uncomfortable, I advise you not to read on! 🙂


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