Questions & Answers

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 the "older" more experienced people,-- who may… 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 for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more

Intching, Pins And Needles On Face And Head

I’ve been having pins and needles and itching on my face and head from taking norco and methadone to manage my pain. Doesn’t anyone have a way to cope with it or any other information. I’ve tried other pain killers and can’t tolerate them as well as I do the opiates. I also smoke pot at night to deal with neuropathy and anxiety etc.

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 i am homebound and no one in… read more

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

Does Anyone With Type 1 VWD Wear A Medical Alert Bracelet?

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.

Hi, I have VWD, I have had red and purple dots for at least 15 yrs. Only on my abdomen and a few on chest. There are tons of them. Some very very tiny, a few look like cherry animolas spell?? A few raised. Most flat and never itch. Never go away completely. Sometimes they seem much worse or more prevalent than other times. Like if i take ibuprofen, which I was told not to but can't help it sometimes. My hematalogist always said its from the VWD. But that was 15 yrs ago. And i can't remember the… read more

Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?

I am scheduled for diagnostic mammogram. I have factor VIII levels in the low 40% and tend to bruise easily. Worried about the mammogram causing significant bruising so am wondering about the experiences of others.

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