The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.

My toddler, Cittie, recently got a new tricycle. She took to it instantly, although she couldn’t reach the pedals yet. The trike has a long attachment that allows us to take turns driving her around the house. Cittie was content to sit back and enjoy the ride. Now she often…

On a recent Sunday afternoon, cabin fever got the best of my family and we headed out to see where the road would take us. Our parameters were straightforward: It had to be within an hour, and the destination had to involve water. Because local traffic has been nearly absent,…

During the summer, my sons and I usually choose a museum to visit on Fridays. It started with “MacDonald the Older” and continues with “MacDonald the Younger.” I look forward to the special times that I get to celebrate with my stinky sons. I call those moments sacred, set apart…

Heroes come in all shapes and sizes. Sometimes, it is challenging to recognize the people in our lives who overcame overwhelming odds to remind us that life means more than merely accepting our condition. We must thrive, even when we face uncertain futures, painful treatments, or life-changing issues. Our champions,…

I celebrated Mother’s Day a week ago at home with my family. We held a sale at our Instagram shop for the family jewelry business and sold several Mother’s Day goodies. It was a relief that this sale was successful. Having enough resources for our family is enough of a…

Spoiler alert: This column shares brief plot details from the Netflix series “Atypical.” Caregiver fatigue is real. It’s normal, and people should talk about it. Lately, my husband and I have been watching the Netflix series “Atypical,” which focuses on the life of an autistic teenager,…

I first noticed the survey as I headed down the street while the sun was rising last Sunday morning. A rock painted bright orange with the words “poll of the day” anchored a sheet protector. Inside, a green index card asked: “Would you rather have a lifetime subscription to Netflix…

Families who live with chronic illness have quickly learned to place trust in medical teams to determine the best course of action. If doctors and nurses suggest we quarantine, we may not like it, but we follow the guidelines, believing that the prescribed course of action will deliver the…

I used to be great about determining if my now 14-year-old son Caeleb was having a bleed. Identifying the symptoms of a joint bleed was second nature to me. Swelling of the joint, warmth to the touch, redness in the area, and pain are a few of the telltale signs…