Some of you have said if I ever need help to just ask. This is me asking and saying, "I need your help." I need you to help me as I volunteer in an organization to offer support, training, awareness programs, and socialization opportunities for individuals and families living with complex chronic illness globally.
You may or may not know that I am one of the over 70 million people in the world living with one or more forms of dysautonomia. Because dysautonomia is an “invisible” condition, meaning people with dysautonomia may look “normal” and “healthy yet have symptoms debilitating symptoms, it is often misunderstood and misdiagnosed. Dysautonomia (pronounced “dis – oughta – know' – me – uh”) is a spectrum of neurological disorders causing abnormal functioning of the Autonomic Nervous System (ANS). The ANS regulates “automatic” bodily functions we normally take for granted such as including temperature control, heart rate, blood pressure, digestion, kidney function and breathing. The symptoms of dysautonomia can be very unpredictable. The disability seen in some forms of dysautonomia has been compared to COPD and congestive heart failure. Dysautonomia is not my only diagnosis, but it has been complicating my other issues.
Personally, as a someone with Dysautonomia, I cannot do the physical therapy, go on the diet plans, and take the medications they might give others with one of my conditions - everything is specially modified. If I cannot find someone who can help me in my area, then I have to travel or help my healthcare provider find the resources to modify. Through DSN, I have met others who gone from bed-bound to working part-time. I have pulled out my writing pads and am thinking of taking on different creative crafts because of the clubs we started - I am not letting these issues stop me from completely living or having goals. I continue to volunteer so I can use the experience I have gained and the time I have in this to learn from others and help others. I am trying to help tend to little mustard seeds, especially my own.
As a volunteer on the National/International level, I have seen how much we support we have done with so little and can do much more.
Dysautonomia Support Network (DSN) is a United States-based, 501(C)(3) nonprofit organization providing support, resources, education, and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders (such as Ehlers-Danlos Syndrome), Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders.
We currently manage more than 60 online support groups 24/7, 365 days a year. We use technology to reach out to those in need, including the homebound, by offering virtual meetings and social events, online educational opportunities, and social opportunities. We are an all-volunteer organization, run by-patients for-patients. Raising funds helps us reach more patients and also to expand the technology with which we serve them, as we have recently branched out into Webinars and Twitter Chats open to the world featuring guest physicians to educate members. We also work with physicians and other healthcare providers to help them find more information and become more knowledgable for diagnosing and treating disorders.
