When I am asked how Thanksgiving was for my family, I tell people that my little family ate a feast at home, watched television and relaxed. It was uneventful, nothing exciting. And that is exciting in itself. When you live with a bleeding disorder, your life can be…
Last week, I was on Facebook and a post I had been dreaming about appeared on my timeline. The U.S. Food and Drug Administration has approved a new therapy, Hemlibra (emicizumab-kxwh), for patients with hemophilia A and inhibitors. It’s the first new medicine for inhibitors in almost…
Normal. I’m not exactly sure if I know the definition of normal. I’m thinking that most normal people would probably not suffer from any kind of illness. No allergies, diabetes, pain or infusions would be part of a normal person’s life. When you live with a chronic condition,…
When you live with a chronic illness, it is easy to feel alone. You can get mired in the daily struggle of caring for your loved one, or yourself, and it can quickly become overwhelming. There are days, and even weeks, when life with your illness is manageable,…
The hemophilia landscape is much different today from 21 years ago, when my first son was born. There were not many choices in products and they all seemed to do the same thing — help with clotting when the body needed it. Over these years, we even went…
When you infuse through a port there are several steps to completing an infusion, as opposed to a peripheral stick. Having all the supplies together and prepared and opened in a certain order to maintain good, sterile technique helps make the process move along quickly. Especially when you…
My mighty warrior Caeleb is only 11 and has had six ports. One cracked, another became infected, one literally worked its way out of his body. You get the picture. But when you are infusing daily for immune tolerance, daily peripheral sticks are not always possible. For the…
Some words can be offensive. I’m not talking about some of the obvious, obnoxious words in the world, I am talking about two words in particular: disease and disorder. If you look at a list of rare diseases, hemophilia is listed. But you don’t ever hear anyone say,…
When your child is little and isn’t able to verbalize pain, you find yourself worrying constantly that you are missing something. “He’s crying, is he having a bleed? Or does he need a diaper change?” You must be the one who identifies why your little one is in distress.
The National Hemophilia Foundation hosts an annual meeting with workshops, exhibits, and social gatherings for the bleeding disorders community. It’s a time when consumers, providers, and industry come together to support one another. When you have been in the community for more than 20 years, the best…
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