Editor’s note: Rare Disease Advisor welcomes Teaira Daniels to our team of Patient Perspectives columnists. Teaira will provide valuable insights into living and learning from life with neuromyelitis optica spectrum disorder (NMOSD). In this question-and-answer feature, Teaira reflects on her path from a prolonged diagnosis period to an evolving treatment plan.
Q. How difficult was it to get your diagnosis?
A. I feel like it was centuries. I started getting sick in February 2012. After becoming paralyzed in 2013 and in the hospital for 3 months before waiting for my transport to take me to a nursing facility, a team of physicians finally told me I was diagnosed with NMOSD.
However, the rheumatologist who released me from the intensive care unit shot it down and said I had lupus. I was not comfortable with her diagnosis. Soon after, I began to do my own research and get more opinions. I’ve had unnecessary surgeries and medicines and was even once told my sickness was all in my head. A friend of mine, a coworker at a children’s hospital referred me to a neurologist. It took 6 months to see him. He officially diagnosed me with NMOSD in February 2015.
Q. What regular sources of information did you come to rely on?
A. I am always heavy on the internet. I’m constantly googling NMOSD and treatments. I go on YouTube and type in NMOSD and different videos will come up of case studies from years ago to current. There are people on there with NMOSD who talk about their journey or how they got diagnosed. I use hashtags on social media. And I also, of course, use my neurologist to communicate with as well.
Q. Did you have knowledge of your disease, or even hear of it, before your diagnosis?
A. No. I was eventually diagnosed twice, but the second diagnosis is the official one. Back in November 2013, after my acute paralysis and being hospitalized for 3 months, I was waiting on transport to go to the nursing home, where I had to stay for an undisclosed time. While there, I told the physicians my current diagnosis was lupus. They then said no, I have Devic’s disease, also known as NMOSD. While I’m looking clueless, the doctors were printing information about it for me to read.
Later, when I saw the rheumatologist, who had been treating me for lupus, she said the NMOSD diagnosis was false. So, once again, confusion and uncertainty consumed me.
Fast forward to 2015 when the neurologist I waited 6 months to see, diagnosed me with NMOSD. At that moment it clicked. My wait was over. At that moment, I became an NMOSD patient.
Q. Has nutrition, diet, and exercise become a more important part of your daily life?
A. Nutrition, diet, and exercise have always been important to me. I was a cheerleader in school and always wanted to have a nice appearance. As a young adult, I kept a gym membership and would take regular classes to stay in shape. I also used to watch my food intake. Since 2013, between the paralysis and being pumped with high doses of steroids, I have been constantly trying to make sure I eat as healthy as I can. The steroids made me gain a lot of weight and being in the wheelchair doesn’t help. I try to get as much movement and exercise as I can because I don’t want the weight gain to cause other problems.
Read more about therapies for NMOSD
Further, my physical therapy is something I take seriously. I have come a long way from being paralyzed and not being able to move my lower extremities. I now can climb stairs, and walk with a walker or 2 small base canes. I do water workouts on my own.
Q. Once diagnosed, how easy or difficult was it to learn about the disease, prognosis, and the treatment options available to you?
A. With social media and the internet being a huge part of how the world revolves, it was a lot easier to find people who had the disease, because hashtags link you to others who have NMOSD. Social media and Google are literally at your fingertips. I remember back in 2008 when my daughter was diagnosed with Pompe disease, I had to rely on her genetics team or social workers at the hospital to get in touch with another family who had a child with Pompe and ask if I can make contact.
There weren’t many who were diagnosed or treated in Cincinnati. But that’s changing. It is becoming easier to find meaningful contacts to exchange experiences and treatment options.