Have you limited your activities since being diagnosed with VWD? or taken special precautions?

How has your life changed since being diagnosed with VWD? Which activities have you limited, and which do you still enjoy? What precautions do you take to limit or minimize bleeding episodes?

Being 73 years old, my activities are somewhat self-limited but I do have a set of rules, enforced by my wife.

1. Keep a fence between me and my pet goose.

2. Wear my Red-wing high top boots when gardening or using my electric chainsaw or other sharp tools.

3. wear good Lowes work gloves or better leather gloves while gardening.

4. Stay within fifty miles of my home hospital, which has my records and my Hematologist. ( I have type 3 vWD and/or Hemophilia A and no hospitals have any experience with this condition. (see other posts)

5. Avoid stores and restaurants which allow people to bring dogs.

6. Do not climb my antenna towers or go on barn roof to fix ham radio antennas without safety harness and bungee cord fall arrestor- an internal bleed other than GI bleed is hard to detect and will probably be fatal.

7. Wear my seat belt before I start car.

8. Avoid activity that involves lots of knives and sharp instruments like broken glass. I don't roller skate or ride a motorcycle. I don't go walking through rose bushes, briars or raspberries. If I use my wood shop tools I am absolutely Safety First before taking action.

9. My cell phone is always on and in my shirt pocket.

10, I keep a close watch on other people, bicycles and cars to avoid any accidental bump or collision.

11. I take my meds carefully to avoid anxiety that might provoke a nose bleed or popped AVM (arterio-venosal malformation in GI tract.

12, My wife and I intentionally plan activities to promote fun and enjoyment while limiting exposure to danger. We kayak, we go shopping for fun. We exercise walk. We are thinking of going line-dancing. We skype with friends and e-mail. I garden up a storm of wild flowers because it can be done on the ground, rewards the mind and body, and gives other people a moment of peace as they drive by my property. I am currently trying to design an "Orphan Disease" continuing education course for staff at the local hospital.

John the elder

That's a great list of rules, John, and I am glad your wife is looking after you. :)

My daughters life has changed dramatically since being diagnosed with VWDIII. She missed 13 weeks of school this year alone. The first 2 years were not as bad, but third year forget it. Her particular case is very hard to control,but we are still hoping for a solution.

She has had to limit her physical activities. We pulled her out of PE altogether she just couldn't keep up and it really aggravated the problems she was having with bleeding. This mainly concerned activities that required a great deal or running or a lot of pull ups. It was hard to explain at first but her hospital provides an advocate to educate the school teachers and administrators regarding this particular disease. That was a game changer for us. She was put on the 504 Plan and was provided a home tutor at no cost to us.

Other than that she remains happy for the most part, socially involved and managed to maintain a 3.75 GPA!

Hope this helps a little.

Congratulations on your daughter's achievements -- I'm so glad you were able to get the home tutor. Thank goodness for the internet, too, which makes educating at home easier. :)

Thanks so much! Without the internet it would have made it almost impossible. She was able to walk in the graduation ceremony with all of her friends who have been so understanding. I will say that the friends needed to know what her disorder was all about ....it's so confusing for kids that age,or any age for that matter. Once we explained they were all very kind. We are super blessed.