Raising awareness is a delicate task. Sometimes, the most effective way to promote dialogue is with a tool that is considered controversial. I understood this seven months ago when I made a T-shirt that was bound to attract both people who loved it and people who hated it.
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I sprained my thumb in my sleep a few days ago. The symptoms point to a condition called De Quervain’s tenosynovitis. An extremely painful sensation runs from my thumb to my wrist joint if I move my thumb in certain ways. Putting pressure on it, as I’m forced to…
I often wonder what my sons feel when they are in the middle of a bleeding episode. Both boys tell me that a bleed into a joint or muscle feels like needles constantly stabbing into the skin. The pain is unbearable and doesn’t let up until a medical clotting…
May is a busy month — with end of school year parties and graduations, the time flies as summer begins. This month is significant for another reason: May is Mental Health Month. It is wonderful that our society talks openly about mental health issues. When I was growing up,…
Inspired to sponsor a national conference for women with hemophilia types A and B, The Hemophilia Foundation of Michigan (HFM) became a game changer last November when it hosted an event called “Being Visible.” Gathering 103 women representing 32 states, the event featured physicians…
Many years ago, while working in the association management world, I had a director who challenged his managers (including me) to calculate the “true” cost of every program we proposed. My director’s challenge was not merely a budgetary task; it was an exercise in extreme critical thinking that moved us…
It is no secret that I am a pastor in the United Methodist faith. Many times, I find that having children with bleeding disorders challenges my theology and how I view the world, when considering divine providence over life and the struggles that make us human. I am…
The month of May can be an emotional roller coaster for many. Social media fills up with parents bragging about their children’s latest accomplishments — honor society, college acceptance letters, awards, and recognitions among them. It’s a great thing to have a network for connection and celebration of each…
I am a patient. I am an expert on my own health experiences. I am an educator. I am an advocate. Hemophilia is a rare disease. Being a woman with a disorder thought once to be male-only makes it complicated to navigate. I…
Our family took a recent trip to White Sands, New Mexico. The dunes were amazing. I had thought that my feet would burn due to the heat. However, I was pleasantly surprised to realize that the sand was cold. I enjoyed walking barefoot as we climbed to the top of…
Recent Posts
- Growing up before treatments for hemophilia were safe, part 3
- I tell my son, ‘When you’re eating an elephant, take it one bite at a time’
- Holding space for grief and love in the hemophilia community
- Hand swelling is first sign of aquired hemophilia A for new mom: Report
- Redefining ‘princess treatment’ in my marriage