SHANNON'S STORY

I was 31 when I got COVID-19 on July 5, 2020. I was living in Miami, Florida at the time and working for Veterans Affairs which is where I was infected with COVID. One month after my diagnosis I flew back home to Iowa to get support from my family because I was still very ill. I had been diagnosed multiple times with anxiety but was skeptical about this diagnosis. While I was visiting friends for the weekend, I experienced such shortness of breath that I couldn’t complete a full sentence and was not able to stand upright on my own. Since then I have had so many different, strange symptoms pop up that it would be tough to list them all. The most severe symptom has been extremely low blood pressure. This was initially diagnosed as vasovagal syncope (fainting) episodes or possible postural orthostatic tachycardia syndrome (POTS) but has since been re-evaluated as more likely to be neurally mediated syncope (NMH), extreme heat intolerance, paralytic episodes of fatigue, nausea, light and noise sensitivity, and severe post-exertional malaise(PEM).

My mom has become my full-time caretaker. I sold my condo in Miami and remain mostly bedbound. I have found some relief through a clinical trial of ampligen (also known as rintatolimod) which is an experimental antiviral, immune-system modulating drug. My mom and I relocated to North Carolina for 6 months to receive this treatment. I am also taking a combination of midodrine and northera, which help with my blood pressure but I still experience blood pressure drops after standing that last for 30 seconds to 1 minute.

Prior to all this, I was an extremely healthy professional. I went to CrossFit 4 to 5 times a week (prior to the pandemic) and lived a very overall active lifestyle. 

I think the most important thing that I wish everyone knew is that people may not look sick, but could be suffering tremendously. If someone says they are sick, it is so important to believe them. It is so sad that dysautonomia has been around for so long and that there are so few available treatment options for patients, to the point that they are often forced into living with very poor quality of life.