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Monday, September 16, 2013

Mitochondrial Disease Awareness Day 2: Snowflakes

Like snowflakes, no 2 patients are a like.

Where one child may have tubes,wheelchair,and other "visual" disabilities, the next may look very normal but be twice as sick.

Where one child might have acute illness that needs prompt medical treatment, that child might be back on the playground playing hard the day after getting out of the hospital. Yet, the next might be ill for months and take months to feel well enough to leave the house, but never life threatening.

Where one has the energy of a normal child except when sick, the next will struggle to lift their head at their healthiest.

Where one person with Mito has no seizures, the next may have constant and unrelenting seizures.

Where two patients have the same diagnosed type of Mito, one may have a great prognosis, the other a bad prognosis.

Where one patient can hold a job and have a career, the next patient may not.

Where one patient attends school the next may need to be home even if the home bound one looks "healthier".

Where one has some sort of Dr appt weekly, the next may need none.

Where one patient responds well to hydration, the next may have little benefit.

Where one does best avoiding chemicals and preservatives the next can eat McD's, packaged grocery store foods(cambells,tyson etc) and thrive on that stuff..

Where one needs a ton of sleep, the next does better with cat naps.

Where one suffers in daily pain, the next has no pain.

Where one patient has feeding issues, the next has none..

And so forth and so on.

Even when 2 patients have the same genetic mutation, they may present as very different diseases.

It is no wonder that some family Drs, and many Specialists want nothing to do with these patients or don't understand,because of the variables in disease presentation it makes caring for a Mito Patient very time consuming and complicated. Each patient may need very different treatment and interventions. Some will be mild, some severe. Some need a lot of care, some very little. To be honest more often then I would like to admit, I share the Drs. confusion. How can you diagnose,treat or cure a disease that looks and acts like every disease? That looks like nothing and everything?

Like snowflakes, no 2 are a like.


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