February 28th is International Rare Disease Day. Rare Disease
Day is an day of advocacy, in the US a Rare Disease is defined as affecting fewer than 200,000 people.
This week I am proud to say people who have a rare or
chronic illness have agreed to share their story in hopes to spread awareness
of various illnesses as well as Rare Disease Day. Some of these will fit the
American definition of a Rare Disease others are chronic debilitating
illnesses.
Just Mildly Medicated is a blog that focuses on my life with
my chronic illness, Dyasautonomia. Dysautonomia is a large umbrella term that encompasses
many conditions that often overlap. While Dysautonomia as a whole is not
considered a rare disease by American standards, estimated to possibly affect 500,000 Americans though we are far from that number in actual diagnosis. Dysautonomia is not well understood and is often misdiagnosed. Even more so than the larger umbrella term the specific conditions that fall under Dysautonomia are often
rarely diagnosed and treated properly.
Dysautonomia International lists a few more common autonomic illnesses such as Neurocardiogenic Syncope,
Orthostatic Intolerance and Postural Tachycardia Syndrome other less common are
Pure Autonomic Failure and Multiple System Atrophy. This is by no means a full
list, just a few examples. My version of Dysautonomia, Pure Autonomic Failure is considered a Rare
Disease by the US Department of Heath and Human Services.
The Autonomic System is complicated and having a system that
is not functioning properly is difficult to treat because the symptoms and
conditions are ever changing. A person could have a common type of
Dysautonomia, say Neurocardiogenic Syncope, then develop a spasm of accommodation
in the ciliary muscle of the eye. Both controlled by the same system and caused by the same illness yet one
considered more common the other rare.
I hope this week people find the time to learn a bit about
what life is like for those who live with illness; through sharing we create
more understanding.
Thank you,
Carrie @ Just Mildly Medicated
Thank you for giving a voice for those of us that may look well but deal with illness every day. Also, you look absolutely gorgeous in that picture!!!
ReplyDeleteThank you for giving a voice for those of us that may look well but deal with illness every day. Also, you look absolutely gorgeous in that picture!!!
ReplyDeleteI had no idea Rare Disease Day was approaching - thank you for bringing awareness to dysautonomia!
ReplyDeleteWay to go!! You are a voice for so many and I can say I have learned more in the months that we've been friends than ever in my life!! I'm embarrassed to admit I had never heard of many of these rare diseases. Shame on me! I'm glad to know there are resources like you to send people like me so we can become educated. Good luck this week and I'm excited to read all you plan to share!
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p.s. sorry it took me almost 10 hours to read you post. what a day!! But know I'd NEVER skip one;)
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Had no idea there even was such a thing. My best friend has a son who has colpocephaly, which at the end of the day means that she has a 9 year old son who spends a lot of time at the doctor's office and in the hospital. And since he's never really going to be older than 4 mentally, living with mom & dad for the rest of his life.I read your blog and don't know why I haven't told her about it yet. Changing that now. :)
ReplyDeleteThank you for taking the time to write such an informative blog and spreading the word for all of us who have dysautonomia in one form or another. I have often thought about writing a blog about life with this but I want to beable to put a positive note on it and right now I am not able to see a lot of the positives....so until I am able to do that it is nice to know that your blog is here so I can let my family and friends better understand what it is we are facing. Happy Rare Disease Day!
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