Why Raise Dysautonomia Awareness?
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!