stories | Erin

“In ten years, I have spent hundreds of days in the hospital, been diagnosed with a handful of chronic conditions, and had an entire realignment of my identity. Surgeries and life-saving interventions have turned my body into something I hardly recognize...but hope has always been an important aspect of my survival.”

- Erin Robertson, 25.

Hope. And- I also noted- a healthy dose of feistiness.

As Erin and her mom settled in to chat with me at Captain Buzzy's Beanery back in April, her blue eyes flickered with an intensity and depth of someone much older than 25. Probably because she's been through more in the last decade of her life than most people go through in their entire lives.

As we delved into the details, I scribbled down all of the medical terminology and the unfamiliar acronyms that had essentially become part of her everyday rhetoric beginning when she was only a sophomore in high school. Erin was healthy- an avid volleyball and tennis player- when she began passing out unexpectedly, often for long periods of time. With each episode, she and her parents became increasingly alarmed. One doctor initially explained it as low blood sugar. Another even suggested she was doing it for attention and recommended that she see a psychiatrist. Frustrated, her family continued to press for answers. Finally, nearly four months after the symptoms first began, they learned she had something called POTS Disease (Postural Orthostatic Tachycardia Syndrome). When a person has POTS, most of their blood stays in the lower half of their body, even after they stand up or change positions. This forces their heart to beat faster to get their blood to flow where it needs to. The result is huge drops in blood pressure, dizziness, and fainting.

POTS is fairly uncommon, so although there was a tiny bit of relief at having an explanation, there were now that many more questions and concerns. Erin and her family's search to find someone who specialized in her condition ultimately led them to Johns Hopkins. By this point, Erin was now a junior in high school and had also started to become violently sick each time she would eat. Her doctor at Hopkins felt that this new issue was somehow connected to the POTS. He sent her to the Mayo Clinic, and it was on her first day there that her bloodwork showed that she had something called Autoimmune Autonomic Neuropathy (essentially, the nerves that controlled her every day body functions had been severely damaged because her body was attacking itself).

Erin could have let this diagnosis have the final word. She could have used it as a crutch, an excuse, an out. But that's not who she is. I had known her for all of 45 minutes, and that much was already clear.

Her mom explained that when her school didn’t provide her with a homebound teacher, Erin essentially taught herself Algebra 2. She also had her mom, a cardiac nurse, give her fluids bef