“To acknowledge another is to paint strokes of kindness on the canvas of existence.” I was unsuccessful in trying to find the source of this quote, but I like it a lot. As human beings, we want acknowledgment of our ambitions and achievements, as well as our struggles. I write…

“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?” A client of mine recently asked me those questions as we chatted before getting to work. She had come into The Nook, a shared workspace I run,…

Spreading awareness about myasthenia gravis (MG) during the month of June can be as simple as talking about the disease in your neighborhood and community. Hosting awareness events locally not only fosters engagement and relevance, but also helps people cope with the rarity of this autoimmune disease. MG is…

“Hey, Shawna, I have a (friend/co-worker/family member) who was just diagnosed with myasthenia gravis. Can I connect the two of you?” One of the advantages — and sometimes disadvantages — of being as outspoken as I am about my battle with this crazy disease is that people turn to…

Yay for June! Do you know why I’m so excited about the sixth month of the calendar year? It never meant much growing up except for the end of another school year. It’s not the month when my son and husband were born. Nope, not our anniversary month, either. I…

To celebrate Rare Disease Day, on Feb. 28, Janssen has launched a refreshed national campaign, called iMaGineMyMG, to increase awareness about myasthenia gravis (MG), provide support to people living with the disease and their families, and open up opportunities for potential research. The company has redesigned the campaign’s…

At some point in everyone’s life, we all feel misunderstood. One of my earliest memories is from when I was 6, and a group of kids made me feel like I didn’t fit in. I don’t remember exactly what they did, but I do remember how lost I felt. It’s…

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Many years ago, my grandfather ended up in the hospital due to a bad fall. Luckily, he didn’t break any bones and was released after a brief stay. I don’t have strong memories from this experience, but one thing I do recall is the bright yellow “FALL RISK” wristband…

Living amid a pandemic can and should be alarming to everyone. However, not everyone understands how individual actions can affect others. Therefore, people with compromised immune systems, such as those of us with myasthenia gravis, may be more susceptible to heightened levels of anxiety and frustration toward those not…