After a little break for Dysautonomia Awareness Month, we're back with our featured DSN volunteer. DSN’s superhero volunteers are kind enough to share their “spoons” to organize local member meetings and events, share state specific resources, help with outreach to local healthcare professionals, moderate our online communities, and much more.
November's superhero is Emily (Emi). Emi had been a member of DSN’s online community, and volunteered as a community leader when she discovered that Maine needed one. Emi is also on our Media Team. She points out the importance of social media “for many of us (Facebook) is where we get the majority of our socialization, and more than anything the compassion and understanding that many we interact with do not have. It’s a place where we can be ‘normal’ and talk about our lives without anyone pitying us or feeling that we are overreacting/seeking attention.”
Emi has been diagnosed with POTS/Dysautonomia, Mast cell activation disorder, Ehlers-Danlos Syndrome, Complex Regional Pain Syndrome , Hypokalemic Periodic Paralysis, gastroparesis, mitochondrial disease, asthma, anxiety, and depression. She’s had some of these illnesses her entire life, although wasn’t diagnosed until later. “I did have to leave college at the end of my junior year because it was just too much for my body.” But she was able to go back to school and finish her degree by taking classes online. Emily just graduated with a BA in English, and with minors in Biology and Chemistry.
Emi lives in southern Maine with her dog Cida (like "apple cidah”), and her two cats Pixel and Nala. One thing she loves about Maine is “that there is still so much nature here. There are still so many places where you can go and just be in silence in a beautiful place.”
Why DSN? “I support DSN because they do a wonderful job raising awareness for not only Dysautonomia but many of the comorbidities/conditions that seem to be attached to it. That way, everyone gets the awareness and help that they need and deserve. The best part is that it is run and maintained by some courageous, compassionate, and hard-working women. There's no better inspiration than that.”
[Photo: Emi and Cida]