Aug 15, 2018


I haven't blogged as POTSgrrl in six years, but I continue to receive emails from people reading the blog. Some readers were worried that something bad happened to me, since I stopped blogging rather abruptly. So I wanted to let you know, I'm good!

Back in 2012, I founded Dysautonomia International because I wanted to take the momentum from this blog and turn into a force for change. With the help of our amazing volunteers all over the world, Dysautonomia International is funding cutting-edge POTS research, educating medical professionals about all autonomic disorders, raising awareness with the public, empowering patients and caregivers with accurate information, and advocating for our patient community in the halls of government.

I started dabbling in POTS research thanks to some long-distance mentoring from some of the doctors on Dysautonomia International's Medical Advisory Board. I eventually ended up presenting research abstracts at medical conferences and writing journal articles with the top experts in the field.

Then I started lecturing on POTS and other autonomic disorders at medial schools across the US and I gave one of the first lectures on POTS at the National Institutes of Health. Along with other volunteers, I organized and presented the first Congressional Briefing on POTS last fall.

I've had some ups and down in my health over the past few years, and nothing has been easy. My POTS is caused by Sjogren's syndrome, which damaged my autonomic nerves. Sjogren's is a relentless systemic autoimmune disease, and in my case, it seems to have taken a "leave no organ behind" approach. I am very fortunate to have great doctors and access to an immunotherapy treatment that gave me back my life. I hope that I can use the knowledge I have gained, the relationships I've built, and the unique opportunities I have been given, to help other people with autonomic disorders find treatments that give them back their lives.

To all of you who stumbled upon this blog because you are newly diagnosed and looking for information on POTS... don't give up! You are on a bumpy road, but you will get better at steering around those bumps over time. Eventually, you will become an expert in managing your POTS symptoms. Things can get better. xoxox