Dysautonomia; Rare Disease Day 2013

February 25th, 2013 by Carrie, the Just Mildly Medicated gal

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


 

Tags: , ,

5 Responses

  1. 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!!!

  2. 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!!!

  3. Lindsay says:

    I had no idea Rare Disease Day was approaching – thank you for bringing awareness to dysautonomia!

  4. in pursuit says:

    Way 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!
    V
    p.s. sorry it took me almost 10 hours to read you post. what a day!! But know I’d NEVER skip one;)

  5. 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. :)

Share Your Opinion