DYSAUTONOMIA is a very, very broad term to describe a mountain of conditions all effecting the Autonomic Nervous System.
There can be very mild forms of dysautonomia to the very severe and even fatal. The term is almost as broad as the disease 'cancer'. It encompasses so many different types of illness'.
When I first learned I had a form of dysautonomia, I did what most people do....I took straight to Google. I was bombarded with a plethora of information. I was immediately relieved to find out it was a rather 'mild' condition that effected mostly just young women and something that you will 'out grow'. WOW, THAT INFORMATION WAS ALL WRONG!
It turns out, there are MANY forms and types, but since many of them are quite rare, there is very little information available. Only the more mild form of dysautonomia seems to yield any online information. There is autonomic dysfunction and autonomic failure. I found through the last 2 years, that some of the forms are so 'new' to doctors and research, that many people in the medical field are not yet even trained on diagnosing or treating these diseases. It's often times a 'mystery' illness. In my case, it took almost a year before I was properly diagnosed, and I had to go all the way up to Mayo Clinic for accurate testing. My local doctors even admitted that this was well beyond their scope of training. I have had more than one doctor Wikipedia my 'disease' right there in front of me.
Since there are many varying degrees of severity, types, and forms, I found the online information to be quite vague. This added to a lot of my own personal frustration. I found it impossible to learn, research, or even share about my own disease. To add insult to injury, since I have the more 'rare' form of dysautonomia, I couldn't find any support from others online or elsewhere. As of today, there is still not even a diagnosis code for what I have. Because of my need to be proactive in my medical care, I was beyond frustrated in the lack of knowledge, research and information available. It took a long time for me to understand more of why this was the case. I, personally, hadn't responded to any medications that were recommended for my illness. I wasn't getting any better. My doctors resorted to many 'off-label' medications, as well. I still didn't respond to anything. I took to the internet again. I just couldn't find anyone else out there like me. My doctor treats only the 'worse of the worse', and yet I was the only patient to not respond to any type of medical therapy. Well, that answered my question! There are so, so few people like me out there in the world. At the time of this writing, I've heard there are less than 60,000 reported cases worldwide of the neurodegenerative disease. I guess people are not exactly throwing money out the window at the research and funding!!!! This is considered an 'orphan' disease. Clinical trials for true complete autonomic failure are very difficult to complete. The people in these studies are often very, very sick people. Many of them may die off before the long term trials needed for FDA approval are complete. Parkinson's patients can often have autonomic failure at the end of their disease progression, and because their research is well-funded, they have been able to push through some clinical trials currently in the works. This will considerably allow more information, research, and funding for those who are living with the truly disabling effects of dysautonomia.
I have purposely not shared my own personal exact diagnosis for several reasons:
#1. While my outlook may seem quite bleak, I know that the information online is not yet complete. The medical community hasn't yet finished their long term research. My doctor, who is considered the leading authority on this disease, will be the first to say that even the genetic factors of the disease haven't even been identified, yet. There are so many things left to study and research. Autonomic failure is often researched in much older patients, and I'm my own unique case! I haven't followed any of the curves so far, so I will not put the label on it.
#2. I'm currently involved in and have been in the past, on many NEW treatments and drugs that are either not yet available here in the U.S. or are so new, they've never been recorded to date. It's important that other patients who may stumble upon this site not get their hopes up, assume a new drug is being released, or push to try a treatment that may prove to be unsafe.
#3. I don't want this to become a 'medical' information site, but more of my own personal illness journey and how I'm choosing to overcome it, mentally, every day!
A few sites online can be helpful. I will try to add links.
http://dysautonomia.med.nyu.edu/autonomic-disorders
http://www.dinet.org
http://www.dana.org/news/brainhealth/detail.aspx?id=9780
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