David Metz (Wisconsin, US)
I have had Small Fiber Neuropathy, Autonomic Dysreflexia, NCS, POTS and Raynaud’s Disease since 2006. It all started with an SVT over 300 beats per minute, an ambulance ride to the hospital and an array of symptoms that grew worse in the following weeks and months. I underwent autonomic testing (Tilt Table, Q-SART, Thermoregulatory Sweat Test, HPR, etc.) and punch skin biopsy at Froedtert/Medical College of Wisconsin in December of 2006. I was diagnosed by Dr. Alex Barboi at Froedtert/Medical College Of Wisconsin in Milwaukee on January 11th, 2007 after a year of dealing with multiple hospitalizations.
I founded The Dysautonomia Connection in June of 2007 and have worked very hard over the last six years to help build the organization and support others with my extensive knowledge of autonomic disorders. While there is no cure for these rare autonomic diseases I take great comfort in being able to help other patients as they adjust to living with their limitations and teaching them how to push those limits and be as productive and fulfilled as possible.
Kyli (New Jersey, US)
I got the official diagnosis of POTS in 2005 after 4 long months of not knowing why suddenly, I could no longer stand without fainting. I was 19 at the time. I went from being a concert-going, fun-loving teenager to somebody who barely had the strength to hold a conversation. I remember thinking at that time, “I will never get through this” and yet, here I am! Over the years I’ve grown so much stronger because of this condition and now more than ever, I’m passionate about spreading awareness and helping other patients. Those four months with no diagnosis felt like an eternity, but I know that some people go decades undiagnosed. This breaks my heart and fuels me to try to make a difference. I believe that together, we can do it!
Shannon Donegan (Ontario, Canada)
I developed POTS when I was just 13 years old and it came on fast and hard. Overnight I became too sick to stand, eat, or even sit up at times. I went through tons of tests and when all came back negative I was diagnosed with anxiety. Then one day, my family doctor noticed my heart rate was extremely high, and sent me to a specialist. I got the tilt test a year and a half after the onset of my POTS, and it was positive. It was great to finally have a diagnosis, but hard to accept that I had a long and hard road ahead. It has been 6 years since I first got sick, and although there have been too many negatives to count, I have learned to focus on the positives of my illness, of which, surprisingly, there are many! I am a different person because of POTS, but I wouldn’t change who I have become for the world.
Frank Figueroa (Alabama, US)
Colleen Powell (Pennsylvania, US)
Up until 2007 I actually was the healthiest in my family. I went from being an active, happy 14 year old, to a teen who spent most of her time in and out of hospitals. A year later doctors finally put a name to the myriad of symptoms; Dysautonomia. Months passed and I just kept getting worse. I became very weak and my stomach shut down. My neurologist suspected it had to be more than Dysautonomia. I spent the next 3 years in a downward spiral. I had even been on the brink of death four times. I spent almost all of 2009 in the hospital. In 2010 at the age of 17 i was finally Diagnosed with Mitochondrial Cytopathy. I will have to deal with both diseases (and more) for the rest of my life.
I am honored to be chosen to be a part of The Dysautonomia Connection. Since diagnosis this community has become my family. I am so happy to be able to help others, like the many others of this community who have truly changed my life. Although my illness has brought many difficult things, it has changed me for the better. I now realize the little things in life and the joy they bring. My one wish is to help find a cure so that one day every patient gets the treatment they need and deserve.
Sarah Dionna (South Carolina, US)
August 2, 2004, out of no where, I began experiencing frequent symptoms of dysautonomia. After spending a year of going to doctors all over the east coast, I was officially given the diagnose of POTS while I was at Bethesda’s National Naval Medical Center. I have also been diagnosed with NCS, NMH and several other conditions associated with dysautonomia. The doctors best guess is that I was exposed to some sort of chemical that attacked my autonomic nervous system while I was an active duty United States Marine. I was recently told by my doctors that I will most likely live with POTS for the rest of my life. I faint frequently but dysautonomia will not keep me down for long. I will always get right back up with a smile on my face and joke rolling off my tongue. I am very happy to be a part of TDC and my hope is help to others in their battles with dysautonomia.
Candice M (California, US)
I was never a very healthy child, but chronic illness didn’t truly strike my life until I turned 16 years old. In 2005 I developed a myriad of mysterious symptoms that no one could explain, yet I continued to function through them as I remained undiagnosed through my late teen years. It wasn’t until the middle of my first year in college at UC Davis in 2007, at 19 years old, that I became disabled by my illness and finally received my proper diagnosis. I was diagnosed with Late Stage Lyme Disease.
Late Stage Lyme Disease is a neurological disease and the part of my brain that the infection chose to attack was my autonomic nervous system. This gave me a secondary diagnosis of Dysautonomia. Since my initial diagnosis in 2007, I have not been been able to return to college and have found myself engulfed in a battle against the disease. The Dysautonomia Connection has provided me with the opportunity to feel connected to others despite being isolated by Dysautonomia and Lyme and to find support from others who understand what life with a disabling chronic illness is like. Contributing to such a community has allowed me to feel as though I’m making a difference as I sit here on my couch. I believe that the TDC has a bright future and I feel honored to be a part of it.
Sean Misgen (Minnesota, US)
Emily Boytinck (Alberta, Canada)