By: Sarah Riedel, RN, BSN – Prenatal Educator and Certified Lactation Counselor
When I was 26 years old, I found out I had a bleeding disorder called von Willebrand disease. I had always bruised easily and had prolonged bleeding, but I didn’t know what “normal” was, so I didn’t think anything of it. While experiencing difficulties with my pregnancy at the time, my OBGYN ran some tests to get to the bottom of the problems. One of the tests revealed von Willebrand disease.
Von Willebrand is similar to hemophilia. With the disease, you experience prolonged bleeding because your blood can’t clot properly. You also bruise easier and more significantly than other people. There are several different types of von Willebrand disease, and thankfully, I have the most common and least severe type.
One way this disease has affected my life is with childbirth. Once I found out that I have von Willebrand, I realized I could be at risk for severe hemorrhage after an event such as childbirth. I met with a hematologist and put a plan in place for after delivery. Thankfully, with the correct medications close at hand, the doctors and nurses could administer exactly what I needed to stop the bleeding.
I also had trouble with a surgery a few years later. Knowing about the disease ahead of time probably saved my life! I had medication administered before the surgery to prevent bleeding, and when I started bleeding heavily during the surgery, the surgeon administered platelets, blood-clotting proteins, and two blood transfusions to help me recover.
Since finding out I have this disease, I’ve been proactive about getting my family members tested for it because it can be inherited. We found that my two daughters, my brother and a couple of his children, and another family member also have the disease.
Both of my girls are active in sports, so we carry a nasal spray medication with us in case of injury, and I always make sure to mention it to their coaches and teachers. I always worry about them getting injured as it would be more severe for them than for other athletes. They would bruise faster. Sprained or broken bones would take longer to heal. A bloody nose would not stop as quickly and may take them out for the remainder of the game. There are a lot of everyday little things that I need to remember with this disease in our home. I don’t want them to miss out on a single aspect of growing up because of this diagnosis.
If you suspect that you could have a bleeding disorder such as von Willebrand, please mention this to your physician so you can be tested! It may save your life!
Other sources for more information about von Willebrand or other bleeding issues include: