Ali Guthy, 18, was diagnosed with neuromyelitis optica (NMO) when she was only 14. It is an autoimmune inflammatory disorder in which a person’s own immune system attacks the optic nerves and spinal cord. Ali, along with her mother, Victoria Jackson, wrote a book, Saving Each Other to share their experience in overcoming adversity together. We interviewed Ali to find out more about her diagnosis and what made her want to write a book with her mom.
Justine: How were you first diagnosed with NMO?
Ali: I was diagnosed four years ago with neuromyelitis optica. It’s kind of a mouthful but they call NMO for short. The story of my diagnosis is interesting. I started having eye pain and losing vision in my left eye in mid-March 2008. I went to four or five doctors in the course of three days and nobody knew what was going on. None of the treatments people were prescribing were working. Finally, we were recommended to a neurologist and he decided to run a bunch of tests, one of them being for NMO. He had never even ordered that test before but by some miracle he did for me! If he hadn’t, who knows how long it would have taken me to be diagnosed and what would have happened in terms of my vision.
Justine: What made you decide to write Saving Each Other and share such a personal story?
Ali: It took some building for me to get to that point. The first step was reaching out to other patients and opening at the symposium. I slowly built a familiarity with the disease and started meeting other patients like me and ultimately all of that inspired the book. A lot of my writing in the book initially was from my journals—I’ve been keeping journals since I was in first grade.
Check out the full interview in the December/January 2013 issue of Justine!