The National Organization for Rare Disorders (NORD) recently held its Living Rare, Living Stronger Patient and Family Forum on June 26, 2022. This event took place both virtually and in-person in Cleveland, Ohio. This forum is an important annual event for the rare disease community and serves as a valuable opportunity for discussion, networking, and recognition of achievements in the space. The event featured several different speakers and presentations, one of which was titled “From Bitter to Better: My Invisible Rare Disease.”
This session featured rare patient Sarah Tobias, founder of Living Well with Sweatpants Sarah, which a Facebook group for patients living with invisible or undiagnosed diseases.
“When was was 23, I had been living with an undiagnosed, debilitating disease for ten years…and I didn’t even know it.” – Sarah
Growing up, Sarah lived an active lifestyle and participated in many different sporting activities. However, she also dealt with a learning disability, anxiety, and OCD. As she entered her college years, Sarah’s athleticism declined. She also started losing weight unexpectedly and began sleeping more. Her lymph nodes were becoming swollen as well. Sarah became dehydrated easily and even low effort movement could leave her catching her breath. Over the years, Sarah’s list of symptoms and problems continued to grow.
At age 22, Sarah began having seizures:
“They thought it was due to dehydration, but still, no one could figure out what the underlying root of all these problems were.”
Sarah’s mother decided that it was time to figure out what was going on, and she had her first integrative health appointment in August 2015. After a three hour appointment, the physicians suspected Addison’s disease. Further testing confirmed their suspicion and Sarah was able to begin treatment for the first time.
“After two weeks of treatment, I was a completely different person…this doctor’s diagnosis wasn’t a death sentence for me. Being accurately diagnosed gave me the opportunity for treatment, which gave me life again.”
Later, Sarah was hit with another surprise diagnosis: Lyme disease. Sarah is still living with these two illnesses, but you wouldn’t know it if you looked at her.
“While I’m significantly better, my treatment is still very complicated…my life is not as simple as taking one or two pills and going about my day.”
Like many people living with rare, chronic illnesses, Sarah still has to make choices about how she will spend the limited energy that she has at her disposal. She says that a support network of understanding people is critical for managing her disease and her life.
- Find Your People
- Keep Being Persistent
- Prioritize Your Passions
- Choose to Think Positive
