Editor’s Note: In this, the first of a 2-part series, neuromyelitis optica spectrum disorder (NMOSD) columnist Teaira Daniels sets the stage for how rare diseases turned her world upside down and how her life has been changed by NMOSD.
It was February 2012. I was just 3 months into a new job, beginning to get my arms around my position as a patient care assistant in the mothers and infants’ unit at a local hospital in Cincinnati, Ohio.
This was my first job in health care. My major was communications/broadcasting prior to January 1, 2008, before my first and only child, my daughter Amariyah, was diagnosed with Pompe disease. She was just shy of 5 months old.
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I had taken her to the emergency room on New Year’s Eve. She was not feeling well overall and specifically became very congested, having difficulty breathing normally. We were there all night when after getting a chest x-ray, the physician asked if anyone in my family had heart problems. My daughter’s heart was enlarged on the x-ray of her chest.
They performed an electrocardiogram (EKG) on Amariyah and an ER doctor said he had observed her heart rhythm patterns before. It was the next morning I was told that she had either a treatable or another otherwise untreatable disease. After many additional tests, the Pompe diagnosis was confirmed. Perfect timing. The FDA had just approved the first drug to treat Pompe.
This was my entrance into the health field as a career and my private world of living with rare diseases.
My daughter’s diagnosis was a wake-up call for me. At that moment, I needed to make sure I knew everything I could about Pompe, a disease I never heard of, and many healthcare providers I dealt with had only minimal knowledge.
My goal was to learn all I could to ensure “my baby” had the best care possible. And I pursued that goal each day. But it was a heavy burden and challenge. Unlike so many other diseases, when a patient is finally diagnosed with a rare disease, like Pompe, that patient isn’t privy to generations’ worth of research, and tried and tested treatment regimens.
Indeed, the rare disease patient is compelled to play a major role in studying the disease, its origins, and, of course, treatment options.
In my case, my beloved daughter passed away just shy of her second birthday. My hurt was unbearable. And through those hard, dark months taking care of my precious angel instilled in me a deep sense of compassion for her and others in the face of such emotional pain and, sometimes, hopelessness. But it also was the catalyst for me to jump into the medical field to help care for others.
And, as if fate would have it, what was ahead for me was another deep dive into the rare disease world. This time, my diagnosis with NMOSD.
