Von Willebrand Disease (VWD) - Online Support Group

Symptom I did not know. Do you?

Firstly, I am grateful for all the urgent care and emergency doctors and personnel that made it possible for me to be able to write this post. Thank-you.

Now to the reason for my post. I joined Ben’s Friends to educate myself about living with my VWD and to share my experiences with others living with it, so that we may learn together. Well, this week I experienced something I never had before and had no idea it was because of my VWD. I went to urgent care because my feet had swollen up the night before. I didn’t worry about it because it has been a really long hot summer (100++
degrees F most days) and I work outside. I thought I was just severely dehydrated. I wasn’t even going to go to the doctor because I felt fine in the morning and the swelling had gone down. My husband talked me into going because as he said “We were on a plane trip last week. Maybe it’s a blood clot?”

Fast forward to many tests and X-rays later and I get sent for an emergency set of blood and iron transfusions plus DDAVP. My hemoglobin level was 4.0. No one could believe I was alive and standing. I got asked time and time again how could I not know I was THAT anemic. Honestly, I don’t know. I felt fine other than the swollen feet thing. Usually with my anemia I get pretty tired, get sunken black eyes, pale skin, the usual symptoms. This one snuck up on me with no warning and I did not know that swollen feet and legs were a sign of serious anemia. This was a lesson I learned the hard way and I am lucky to be able to share my story so that others with VWD know symptoms to look for.

Hey VWDgirl!

Good to see you posting around here, summer activity has definitely died down a lot - although new members have continued to sign up so hopefully that will start changing soon!

I’m glad to hear that nothing seriously bad came of this apart from a pretty big scare and wakeup call. Whether it was luck or genetics that was on your side - I’m sure the rest of the community will appreciate the cautionary tale and advice.

Wish you the best and hope the swelling has fully subsided!