How To Be A True Hero Despite Living With Rare a Disease

We all know what it’s like to have a bad day, a bad week, or even a bad year. But the thing is, with time, things usually work out; life gets better and we move on.

But for people living with a chronic and progressive illness without effective treatments, it’s devastating for patients and their loved ones.

Living with a chronic disease takes a stadium full of chutzpah!

Take Jay Dunn, and his mother. Fox Channel 2 in Detroit describes Jay’s story of suffering from a cruel and severe neurological movement disorder/disease called dystonia.

While there are different types of dystonia, like cervical dystonia or acute dystonia, most often the cause is idiopathic, which means the cause is not known. Characteristics of dystonia include: involuntary muscle contractions (intense or mild) in any part of the body, which can lead to slow, repetitive motions and intense tremors, and intense pain.

While the vast majority of people who suffer from dystonia symptoms do not experience cognitive issues, they tend to suffer from emotional pain because of the loss of physical function and rightly so.

So, imagine what it would be like if:

You couldn’t feed yourself without hurdling food all over the floor.

You couldn’t take your doggie for a walk.

You couldn’t go to the toilet on your own?

Every picture of you is “awkward?”

Your chances of hooking up with the girl of your dreams seems lost?

Although he can’t drive and is largely dependent on his loved ones, Jay, now in his mid-30s is fiercely determined to live his life! He’s one sharp and very determined dude who’s a now a student at a community college.

And while his physical struggles are intense at times and heartbreaking for his mother and friends, they’re all still motivated to keep fighting because the alternative is not acceptable.

So in a perfect world, let’s imagine what it will be like when an effective treatment becomes available for dystonia sufferers:

Your parents will stop hovering!

You’ll feel equally as awkward as OTHER kids in school cuz you’ve been there and done that!

With renewed confidence, you’ll make out with the girl of your dreams…

You’ll party hardy—on occasion.

You dump the hot girl for a smart girl genius.

You’ll become wildly popular for all of the right reasons.

You sell your new startup company for 30 million dollars.

You’ll travel to far and distant lands…

You donate 5 million to science to help develop other treatments for rare diseases.

You donate another 5 million to your favorite charities.

You live happily ever after.

Share David’s story with your social networks to show how a chronic disease shouldn’t be where life stops.

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