After nurse Amy Laudin’s daughter, husband, niece, and nephew were diagnosed with von Willebrand disease, her personal experience has helped her spot signs of bleeding disorders in her patients. She’s found that learning more about the disease and advances in treatment have helped her both professionally and with her family.
Transcript
My name is Amy, and my relationship to the bleeding disorder community is actually relatively new.
Our daughter got diagnosed just a few years ago, in 2023, and that led to my husband getting diagnosed a year later, at age 43. It has also led now to my niece and nephew being diagnosed with von Willebrand disease.
I just finished one of the panels, and it was talking about the new and advancing treatment options that have become available. It was really kind of cool to see how far treatment has come in general for hemophilia, especially with subcutaneous medications and how they raise somebody’s bleed threshold. Factor medications are great, but factor medications go up and down, up and down. Now we have these really great subcutaneous drugs that help raise levels above the bleed threshold.
As far as being here, it’s great to hear about the different topics and meet people from all over the country. I’m hopeful to see the advancement, I mentioned von Willebrand disease, and there are some new medications coming out. Just seeing the advancement on those populations that may not have had the spotlight that hemophilia has had for a good long while. Just being able to spotlight other rare conditions and being able to see the medical community be like, “OK, let’s do some research. Let’s find out more about these conditions so we can help this population and get them the same access to resources that other diseases have.”
What it has really done for me is, for one, help me once my family got diagnosed and just, it kinda being, getting involved in a community and learning about it, me as a nurse, I’ve been a nurse now for over 20 years, it has helped put things on my radar, right. Things I may not have been as aware of before, like, somebody has heavy menstrual bleeding. So that’s on my radar. If someone comes into our our infusion suite or something and they have that, my radar is up as a nurse to ask those questions, ask a little bit more in-depth questions. So it really has enhanced my radar to ask those questions of my patients and everything.
If you’re unfamiliar with something, you know, look for your nearest hemophilia treatment center or organizations like the National Bleeding Disorder Foundation. Look to those organizations, if you’re not familiar with bleeding disorders, there are tons of resources, including NBDF, the Hemophilia Alliance, and, of course, your local bleeding center.