One of my greatest fears has come to fruition. Last week, my daughter was diagnosed with vitiligo, a disorder that causes the body’s immune system to attack skin cells that produce melanin, causing the skin to lose its color. Upon hearing the diagnosis, I felt the air leave my lungs,…
parenting
I thought I had put on a brave face and spoken in a calm tone. I’d told my daughter that I’d been to the emergency department at the hospital many times before, so it wasn’t a big deal. I’d be home before her bedtime. Three hours in, she started to…
One of the most important jobs new parents have is to protect their children from pain. I am a mother of three, and every time one of my kids gets hurt, I want to take on the pain myself. When my youngest daughter, Bella, was hospitalized with neuromyelitis…
This week, my sweet girl, Sophie, has turned the big 10. I’m feeling all verklempt because they told me she couldn’t exist. But doctors are wrong sometimes, and I’m glad I trusted my gut. Twelve years ago, little information was available about neuromyelitis optica (NMO), and even less about…
Caring for our mental health and pursuing wellness require a lifetime commitment and hard work. It’s sometimes easier said than done, but taking a moment to yourself to reflect on the day, or on a feeling or emotion, can do wonders for your mental health, especially when living with chronic…
I’ve been so exhausted before that I’ve said, “No one will know if I leave the kitchen looking like this.” Dirty dishes will be piled up in the sink, while clean dishes are still in the dishwasher. A sticky substance might appear on the counter, but thankfully the black marble…
I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis…
How I Found My ‘Courage to Care’
Some people are natural-born performers, leaders, artists, lawyers, doctors, or teachers. I like to say I was born to be a caregiver. Some of my first memories are watching over my younger sister and cousins while we were growing up. I like to think that caregiving is something that runs…
Recent Posts
- Soliris reduces relapse rates in AQP4-positive NMOSD patients: Study
- The pain of NMOSD nerve sensitivity means more than just a cold shoulder
- Most adults with NMOSD use biologic therapies: Registry study
- Every time I turn to Dr. Google, I get an immune system mystery
- Conventional NMOSD treatment effective in double-negative cases
- Grieving how NMOSD has left me uncomfortable in my own skin
- Enspryng outperforms standard immunosuppressants in NMOSD study
- Slow and steady: I’m ditching big resolutions and easing into a new year
- Late-onset NMOSD responds better to newer, highly effective therapies
- New biomarker may help gauge disease severity in NMOSD