Hey everyone!  I’m not sure if anyone reads these anymore, but I figured I would come back and conclude things in a cool way.  For those of you who have joined the 12 More Pages facebook group since my last blog post, I founded this organization when I was a senior in high school.  I was suffering from severe symptoms and was extremely debilitated.  I made it to college and found that things were growing extremely fast with the organization, my symptoms were worse due to the stress of college, and well I stopped doing anything with 12 More Pages.  I abandoned a lot of people and for this I am truly sorry.

In terms of my personal health, my relapses are fewer than ever and aren’t debilitating.  I don’t have to check my blood pressure everyday, and I am finally adjusted to college so I can live a pretty normal life.  Just being able to live my life recently without feeling debilitated by symptoms has been the most amazing feeling I have had since I had a stroke over 3 years ago March 11, 2007.  I’m not nearly completely recovered, but I’m happy and I finally feel like I have my life figured out.

To be honest the last thing I’ve wanted to do was blog or give personal help since I have been feeling better.  It’s like getting dragged into a past of bad memories.  I am happy, and hearing about people going through the same terrible experiences I went through on a daily basis really started to wear me down.  I became extremely conflicted and decided the best way for me to handle the situation was to run.  I dropped contact with a lot of you, and have acted like a terrible friend to people that took me in during the hardest time of my life.  I couldn’t be more sorry.  It was a child-like response to a call for responsibility.

That being said I don’t think I can never be involved with 12 More Pages in the magnitude I was before.  I want to have the college experience.  I want to have my life back, and I can’t do that while holding onto the past.  The time and effort it takes to run this organization well is unbelievably high, and I can’t keep up with it during the school year.  For these reasons I have decided to discontinue my personal blog as part of the website and postpone all future development or awareness projects.  If anyone would like to take over 12 More Pages then feel free to contact me, but for now 12 More Pages is indefinitely on hold.

I still encourage everyone to use the facebook page to share stories and experiences.  In the spirit of 12 More Pages, everyone has a story, and it deserves to be heard.  So while the blog, the news updates, awareness projects, and other developments may be indefinitely over, the stories and friends that we have made still carry on.  For this reason I encourage everyone to still use 12 More Pages to connect and discuss their experiences.

I have put countless hours into building 12 More Pages.  It’s been a privilege to watch the dysautonomia community grow, not just within 12 More Pages but around the world.  The number of support groups and information available has sky-rocketed and life will hopefully only become easier over the years for people with dysautonomia.

I’d like to conclude my involvement with 12 More Pages by writing about my 12 most valuable lessons learned from dysautonomia.  Without a doubt, now that I am feeling better so much of my past experiences have become clearer to me.  I haven’t conquered dysautonomia, I don’t understand the disorder entirely, but I have grown tremendously as a person.  I may not have the answers, but hopefully these 12 reflections will help anyone who reads them come to terms with their illness.  I can’t thank everyone enough for their help and support of 12 More Pages over the past two years.  You all have been some of the most incredible people I have ever had the pleasure to meet.  For me however, this is time to put this disorder behind me and close this chapter of my life.  Thanks again, and I hope everyone is feeling well!

-Tyler G.

We’ve talked a lot about easy ways to raise dysuatonomia awareness this past week, but for those of us that don’t have dysautonomia or have lucked out and been easily diagnosed and treated why is awareness so important?

The major issue with dysautonomia is that this disorder is not clear cut in diagnosis.  There are many different sub categories of dysautonomia and other disorders that can cause dysfunction of the autonomic nervous system.  This makes treating dysautonomia highly individual as different patients will have different symptoms.  Because of the individuality its necessary for most people with dysautonomia to find a specialist who can devote the time to develop a plan that is unique for the patient.

There aren’t too many specialists out there, and while awareness is growing in the medical community many doctors have still never heard of this disorder.  I’ve heard of people going multiple years without a diagnosis, and when they have a diagnosis patients often receive sub-par care.  For example, I was diagnosed at the Medical College of Virginia (MCV), a premier hospital in Virginia and I was diagnosed off the internet.  The staff at MCV were learning about disorder as they learned to treat me.  I feel fortunate as the medical team at MCV had the connections with specialists at Mayo to help diagnose and treat me.  This is not the case for the majority of patients with dysautonomia.

Once people are diagnosed and begin stabilizing due to treatment, they often face another upward battle which most everyone never anticipates.  This battle is with the lack of understanding between family, friends, and colleagues.  School students have to deal with teachers that don’t understand their inability to concentrate and frequent crashes.  Patients have to deal with friends and family as they may not always understand their inability to do normal activities.  This is particularly true for those of us that can walk around.  We may look normal, but on the inside our body’s are exhausted.  Having an “invisible illness” is definitely extremely hard to overcome.

A little awareness among the community will help the general public understand how debilitating dysautonomia really is, and help doctors make the diagnosis.  If every neurologist understood this disorder then thousands would be back to living normal lives years earlier than those who go from doctor to doctor looking for a diagnosis.  Dysautonomia rules many of our lives, but it doesn’t have to.  Take a little time this week and help spread awareness.  Together we can beat dysautonomia!

-Tyler