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I am a believer in the benefits of summer camp — hemophilia camp to be specific. Children with bleeding disorders across the U.S. have the opportunity to spend time away from home and participate in activities they may not usually experience. Hemophilia camp is a place where kids can…

I have a confession: I hate to self-infuse. I am really bad at it. Well, at least most of the time I am. The multitude of blown and missed veins over the past few years have synthesized to wholly deflate my confidence with this critical skill.  …

The toughest part about moving to a new city or state is locating health providers that are covered (most likely) by a new insurance plan. It’s difficult for families with hemophilia, like ours, to find pediatricians and internists. But dentists are by far the most challenging to locate. Fellow…

Living with a chronic bleeding disorder brings a whole new set of words into our vocabulary. Around my house, when it is time to infuse, we say, “Hey guys, its time to get liquored up.” While that may sound odd, our word choices help to remind us that each treatment…

When my youngest son needed daily infusions, keeping up with factor and supplies was not difficult. There was never any question as to when an infusion would take place, and ordering what was needed was the same every month. At one point when his treatment was extremely complicated, each month…

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.

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…