Patient Advocate Spotlight: Christina Thielst

2.8.18

Guillain-Barre Syndrome, or GBS, is a rare disorder where your body’s immune system attacks your nerves causing tingling, weakness and eventually paralysis throughout your body. Christina Thielst of California is one of the estimated 3,000 to 6,000 people who develop GBS each year.

After a long career in the health care field, Thielst never expected to be a patient struggling to get a diagnosis. She began to notice changes in her body, and saw a neurologist when she first experienced paralysis. The doctor ruled out multiple sclerosis and brain tumors, but that didn’t give Thielst any clarity.

“It was extremely frustrating,” Thielst said. “I was only 53 at the time, and I remember being afraid that I would fall and break a hip because I didn’t know what my condition was or how it would progress. I felt fatigued all the time, and I would have to take a nap after completing tasks as simple as folding laundry.”

If diagnosed quickly, GBS can be treated and patients can recover some of their strength and mobility, but delayed treatment increases recovery time and decreases the likelihood of having your body return to normal. After submitting my case for a virtual second opinion, including one from the Mayo Clinic, Thielst knew her next step was to schedule an appointment with the Neuromuscular Clinic at UCLA, where she was diagnosed with GBS eight months after experiencing the first symptoms. For Thielst, it was a relief to receive an explanation, and it validated her condition in the eyes of her neurologist and family.

“My family was struggling with what was happening…why couldn’t I drive to the grocery or bring my daughter to school?  And, why did it take me so much effort to climb the stairs to my bedroom?” said Thielst. “After receiving my diagnosis, they began to understand what I had been going through and this clarified the support I needed to move forward.”

Initially, Thielst had to give up some of her work and reduce her online teaching.  Unfortunately, Thielst experienced extreme challenges with State Disability Insurance (SDI) while trying to come to terms with her slide in functional abilities, not yet having a diagnosis or treatment plan, but a desire to stay engaged with her professional life. Despite her attempt to do the right thing and report her work teaching a course, Thielst was penalized financially, because she had multiple employers and mostly seasonal work.

“Dealing with the disability system and their confusing policy and ineffective communications wasn’t worth the stress of trying not to give up everything I had built,” said Thielst. “Their system isn’t designed for someone who isn’t the typical worker, with a regular schedule.  They didn’t consider that I might be able to do some jobs, but not others.”

GBS remains a difficult disease to identify and accurately diagnose, which has led Thielst to speak out on her blog, Christina’s Considerations, about her experience so others know what it’s like to battle an “invisible illness.”

“My experience is a shared experience, even if it isn’t always recognized” said Thielst. “It’s important to raise awareness and let others know they’re not alone.”