Do any of you with VWD experience petechiae and fatigue?

For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?

How do I discourage my 17 yro. Severe Hemo. A son, not to buy a motorcycle?

.Hi, My 17 yro. Severe A son, is determined to buy a motorcycle. He has written and explained a 3 page report to me and his dad the reasons why he should be allowed to get a motorcycle. To me, this just sounds like the craziest idea in the world.--No exceptions!---A no brainer. But trying to convince my son is a totally different argument.
This would not happen right away, but probably within the next 6 to 8 mos.
I am searching for help from… read more

When surgery is needed , how do you get oncologists/hematologists to work with surgeons to arrange surgery, infusions, and observation?

I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging… read more

For Mild Hemophilia- females- How do you know when to treat, what symptoms do you experience that you relate to a bleed?

As a newly diagnosed female (former symptomatic carrier without treatment) I am trying to understand what others are experiencing and what advice they are getting. I want to have some background info to bring to my local hematologist and my HTC. Since my diagnosis I have heard some people say treat for pain even without swelling or heat, others say that there has to be visible signs of a… read more

I don'know if i fit in. I have factor 5,8 and 10

I only take coumadin, i am hearing different treatments from reading others comments. I don't know that i have a lot of questions. I will as i go on, i just want to fit in. I have a hemotologist at the U of M Minnesota. My Dr. Is suppose to specialize in these types of blood disorders. But he has said to me these 3 together are rare. I also have Stills disease which is an autoimmune disease. It is also rare. I was a nurse and a Social Worker very busy and needed. Now… read more

Does anyone with Type 1 VWD wear a medical alert bracelet?

Has anyone have prolonged menstrual cycles associated with excessive bleeding

Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease

Elbow pain - older Haemophiliacs

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

Does any one have factor five Leiden and if so does your body respond to pain medication?

Is there anyone that would recommend a supplement insurance for copay and etc.?

Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks