I #TiedOneOn is a campaign to bring awareness to a rare disease called Dysautonomia.  October is known for breast cancer month, but less known is that it’s also Dysautonomia awareness month.  It means that we are trying to bring awareness to the medical field.  Yes, you read correctly, many doctors and nurses are not educated in diagnosing and treating the many forms of  Dysautonomia.  We need to change that.

Of course it’s also important to bring awareness to the public as well, as it’s called the “invisible disease”.  People affected with Dysautonomia often look fine on the outside but are really ill on the inside.  To hear people say:  “but you look fine”, is common.  For the person struggling it can be hurtful to hear, and it can feel like they are not being taken seriously.

So what is Dysautonomia? It is a dysfunction of the autonomic nervous system (ANS) in the body.  The ANS controls your heart rate, breathing, blood pressure, digestion, excretion, body temperature, and other involuntary bodily functions.  In other words; ANS controls everything we take for granted, everything within the body that should function without us thinking about it.  All its functions should be automatic, and it’s nothing we can control. There lies the hardest part.

We want to be in control of our own body. When the ANS fails to function it differs from person to person which symptoms are most profound. It can range in severity from mild to fatal.

So yesterday I #TiedOneOn for my son Christopher, our friends Claire & Bella, myself and everyone else who is fighting any form of  Dysautonomia.

My son is proof to that there is hope.  After three years of being critically ill, he was able to fully recover due to excellent treatment, support and time.  He is a true miracle!

I believe there are more people who will recover sooner with awareness and education. This illness will take many different forms and is played out differently for every person. A few things are the same though: it is real, it is difficult, and it is a battle.  For some it will last a couple of years, and for others it can last a lifetime.

There needs to be more research done, and more awareness among the medical community.  That is what this month’s campaign is about.  But the fight doesn’t end with the last of October.  It is a fight 24/7, and you must fight for a better tomorrow!  Never ever give up fighting the battle!!

I’m trying my best in fighting this illness.  To try your best is all you can do.

Please join me!


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