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ABOUT US

Abby:

I lived in Portland, Oregon until the age of 11, when my father’s job moved my family to Moscow, Russia for 4 years and then Munich, Germany for 3. After graduating from an international high school in Munich, we returned to Portland for another 4 years. We currently live in Salt Lake City, Utah (I’m honestly still trying to adjust to the culture here).

I was never a particularly healthy kid. For instance, it was determined at the age of 14 that I had a growth disorder that required me to inject hormones twice daily for 2 years in order to mature. But it was all nothing compared to the symptoms that started showing up when I was 17.

They included tremors, overwhelming fatigue, brain fog, numbness on the left side of my face and body, muscle spasms, pain, orthostatic intolerance… Basically, the processes that involved regulation by the autonomic nervous system were disrupted, e.g. body temperature, heart rate, blood pressure, circulation, digestion, and all that fun stuff.

So my world shrunk dramatically. My illness meant that I couldn’t pursue schooling, I couldn't do most physical activities (just standing up proved difficult), it was hard to socialize, to do anything at all really. In fact, for the last 7 years I’ve rarely left my home for non-medical reasons except when my best friend Jess visits from London once or twice a year.

Goals: Recover enough to go to university and become a therapist specializing in counseling patients that are facing health issues--I think mental health support is integral to the treatment of serious injury and illness. Travel with Jess. Learn how to use chopsticks properly.

Little loves: sparkling water, the smell of laundry, swishy skirts, finding the perfect word

Diagnoses: acquired Chiari, hEDS, POTS, dysautonomia

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Heather:

When my youngest daughter became incapacitated because of complex health problems, I assumed the role of full-time caregiver. The last seven years have been a crash course in microbiology, genetics, disability law, neuroscience and human nature.

 

Wife, Mother of Daughters, Nana

 

Novelist (Star Trek: Deep Space Nine and Voyager); fanatical reader; foodie; insomniac; novice meditator and pursuer of mindfulness 

 

Loves: cooking; live theatre; The Beatles; Russian literature; art museums; lilacs; criminal procedural dramas; autumn; starry night skies in red rock country (southern Utah and Arizona)

Most memorable places: The Meteora; Ypres; Maasai Mara; Westminster Abbey; Amsterdam

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