Moving is challenging. Moving means packing, having to decide what to keep and what not to keep, learning a new place, having to find a new grocery store, a new hair and nail salon, a new healthcare provider. Doing all that this time offered an opportunity to remember and…
Columns
I had previously heard about the term health anxiety obsessive-compulsive disorder (also known as hypochondriasis or illness anxiety disorder), so one day I decided to research its symptoms. Frequent visits to doctors and the emergency room, seeking reassurance that you are not ill from physicians, friends, and family, and…
As we observe National Family Caregivers Month, I’ve found myself reflecting on a column I wrote in which I admitted that the word “caregiver” never quite fit me. That piece was about rejecting a label that flattened our dynamic into something one-directional. But there’s another truth I didn’t explore…
The energy in the room was unmistakable. Before the official start of the Hope Conference in Orlando, Florida, last week, a group of women had been invited for a special preconference event — a day set aside just for us. It was marked by laughter, the sharing of stories,…
My last home had a great fence. It was a wall of concrete blocks surrounding my backyard and stood 7 feet high. With two dogs who bark at the wind blowing, the wall deterred them from jumping and kept some of their barking at bay. However, there was an iron…
Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…
My husband, Jared, was 11 when hemophilia changed the course of his life. He wasn’t doing anything reckless — just being a boy, jumping around on his bed. Then came the misstep, the fall, the blow to his head. He brushed it off, not realizing that a slow, dangerous…
After every storm, there’s a moment when you think the hard part is over. The winds calm, the skies clear, and you take that first deep breath of relief — only to realize the real work is just beginning: the cleanup, the repairs, and waiting for things to return to…
A columnist reflects on how a lifelong friendship taught her the value of “meeting halfway,” a lesson that later guided her advocacy while raising a son with severe hemophilia. When gaps in care emerged, collaboration and persistence became essential to securing the support he needed.
Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…
Recent Posts
- Growing up before treatments for hemophilia were safe, part 1
- WHO resolution aims to address gaps in hemophilia care
- Learning how to infuse factor gave my family freedom, part 2
- Desire to help people after hemophilia diagnosis outweighs online uneasiness
- When it comes to genetic tests for hemophilia, don’t forget Grandma