Sandra Dorst knows well about change and acceptance. Diagnosed with Anti-Synthetase Syndrome (ASS) at the age of 38, Sandra found herself suddenly confronted with an extremely rare and chronic autoimmune condition. In fact, it affects only 400,000 worldwide. This disease targeted and compromised her lungs, muscles, joints, and skin.
For Sandra, a happily married mother of three, young children, this diagnosis meant life as she knew it would never be the same. It meant a future of scheduling endless medical visits, lugging oxygen tanks, and enduring doses of prednisone, which promised the uncomfortable side effects of weight gain and hair loss. And, of course, it meant emotional upheaval.
In her blog series, Relatively Unscathed, Sandra expresses the worry that her children would never see her healthy again. In a single day, Sandra’s life had shifted. “In the beginning,” she recounts, “I started to see a counselor because every time I was alone, I was crying.” Through him, she found the right message. And, step-by-step, she found solutions that not only allowed her to survive the disease but helped her live life to its fullest—whatever that meant—on any given day.
The one thing about Sandra that did not change was her ability to cope and adjust. Treated by six, different specialists ranging from local to Mayo to UCSF, she plunged into taking charge of her condition. She researched and navigated medical systems and partnered with doctors and nurses. She blogged. She learned to accept and appreciate help. She changed her diet and built “safety nets” that supported her efforts to live fully. She began to take trips with her family again. She nurtured her friendships. And, incrementally, through a series of small, but deliberate choices, her health improved. She exceeded personal and medical expectations. This year Sandra was well enough to learn to ski, and she can now move about freely without supplemental oxygen.
Prior to being diagnosed, Sandra Dorst lived large. Sandra writes,“My life reads better than most people’s bucket lists.” She trekked in the Himalayas and met the Dalai Lama at his house. In addition, she earned a motorcycle license in Bali, owned a nightclub in Peru, and visited 48 out of the 50 states. She also managed to marry the love of her life and give birth to three, amazing children.
About Wise Resources
As Sandra discovered, managing an autoimmune disease can be a full-time job. “Having an autoimmune disorder is like having a one-year-old; planning is essential.” Sandra’s combined experience prompted her to share her knowledge with those affected by chronic illness—directly or indirectly—as patients, caregivers, or family members.
She founded Wise Resources for Health to offer support in the form of resource and knowledge coaching, emotional support, and advice on how to discover the right diet and exercise programs.
Sandra’s extensive experience as a hospital director of an advanced wound healing center gives her the unique perspective of directing healthcare from different perspectives.
Since being diagnosed, she has created and led a local support group for those with chronic illness and/or pain. She is a member of the Tahoe Forest Non-Malignant Chronic Pain Advisory Board. Sandra recently accepted an offer to join the Tahoe Forest Patient and Family Advisory Council. Sandra is also a trained leader in Stanford University’s Chronic Disease Self-Management Program (CDSMP). She will be leading groups locally on an annual basis.
“I can help others to be inspired to take control of their lives and health in all the ways still possible.”