This organization sends out care packages to those young and old affected with Dysautonomia. Deliveries for Dysautonomians is a non-profit charitable organization which sends out care packages to those affected with any type of Dysautonomia. Registered with the Maryland Charitable Organization Division and is operating as a 501(c)(3) charitable organization.
Dysautonomia (DISS-AUTO-NO-MEE-UH)- is an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, and temperature control. Conditions such as Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, Mitral Valve Prolapse, Pure Autonomic Failure, Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), Parkinson's Disease, Shy-Drager Syndrome, Familial and Non-Familial Dysautonomia, autonomic instability and a number of lesser-known disorders such as Cerebral Salt-wasting Syndrome are all types of Dysautonomia. Dysautonomia is associated with Lyme Disease, primary biliary cirrhosis, Multiple System Atrophy (Shy-Drager Syndrome),Ehlers-Danlos Syndrome, and Marfan Syndrome for reasons that are not fully understood. With these conditions, many symptoms can be present at any time. A complete list of all symptoms can be obtained here: http://www.dinet.org/symptoms.htm
Many patients with Dysautonomia are bed-ridden or house-bound. Although this is not a requirement at all, care packages are directed to those especially with conditions such as these to put a smile on their face! My name is Brittany Lewis, I am the founder of this organization and I have been living with Dysautonomia for about 4 years. I didn't really realize anything was wrong until my freshman year in college. Throughout high school, I was very tired and somewhat weak but I just thought that it was normal. I would climb steps and my heart would go so fast I thought I was having a heart attack. I felt so dizzy and weak that I couldn't even focus in class. Finally, in February of 2011 I was hospitalized - for the first time in my life. It took a couple of months of hospitalizations for me to finally have the Tilt-Table Test. This test diagnosed me with "Postural Orthostatic Tachycardia Syndrome", Neurocardiogenic Syncope, Neurally Mediated Hypotension, and Orthostatic Intolerance- all forms of Dysautonomia. Basically what this means is that my nervous system cannot tolerate gravity, and cannot provide my brain with enough blood to keep me conscious if I stand for a long period- or sometimes short period of time. While on the tilt table after about 20 minutes or so, my blood pressure got down to 31/20 which is when I black out. I've been on many medications, seen lots of doctors, including a couple from Vanderbilt University Medical Center's Autonomic Dysfunction Center. Since being diagnosed, I've researched many different websites, articles, medical journals and talked with many people and doctors to try and learn as much as I can about this illness. While reading a study a few months back on syncope, I came across a new pacemaker call the Biotronik Evia DR-T. This pacer was supposed to keep one's blood pressure from dropping allowing blood flow to continuously flow through the brain and rest of the body. After much research I approached my EP cardiologist. He agreed that the medicine was not doing it's job and that this was the best route to take. I had the surgery on June 25th,2013. Before the surgery, I was passing out up to 8-10 times a day in the summer. Now, I'm not passing out at all! This pacemaker has truly been a blessing! I am still on some medications, and I still get weekly-bi-weekly infusions through a port, but all in all I feel a lot better. My goal is to spread awareness to those who haven't heard of Dysautonomia, and hope to those that live with it everyday just like me. So I know what it is like to be bedridden time to time, and to not be able to do things that I wish I could. While in bed, little visits, phone calls, cards, really cheered me up! I really hope that I can cheer someone up with a care package! To learn more about Dysautonomia, visit:
www.ndrf.org
www.dinet.org
www.dynainc.org
