I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.
I have two kids with the disease as well as myself. It was hard to figure out why we were bruising so bad and why we had a rough time with bleeding but when we were all tested then I knew where to start. The hemophilia center my family goes to are a god sent.
I’m 61 and I have mild type 1 vwd I. I have had bleeding into my joints and musicales. Lots of finger, ankle and knee, and elbow bleeds. I have tried lots of ways to treat the bleeds and use wilate, as needed for bleeds now (humate P worked ok too). As a kid I spent lots of time in the ER with injuries I couldn’t explain, they seem spontaneous, lots of big bruises before the diagnosis. I wasn’t diagnosed until in was in high school, when I had my own job with my own insurance. Went to lots of places looking for help. I have had to have my ankles fused, a total right knee replacement and I have had radioactive isotopes injected into my knee and elbow. Rest, ice, compression and elevation are normal routines. I have neuropathy from the surgeries. I have had some other surgeries unrelated to the VWD. It took me longer to get my degree, I’ve had to leave jobs because I couldn’t manage the VWD and work the hours needed. Missing school and work are normal. Chronic pain is normal. Been on pain killers for many many years. Your results may vary because I was undiagnosed and had many untreated bleeds. If you’re a woman, you can expect longer periods and possibly heavier flow and bruising. You need to learn if stimate (inhaler)?works for you, if not you might need to learn to give yourself IV meds. You need to be treated for bleeds before you see a dentist for cleaning, cavities or root canals.
You need to find a hemophilia clinic and get checked up by a doctor that understands bleeding disorders. Contact the Hemophilia Foundation in your area for resources. If you live in California, apply at GHPP (Genetically Handicapped Persons Program). All the info is on the web. I’m here if you need to chat.