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i need knee surgery, and maybe back surgery. I have a pace maker and can't have an MRI aslo, they want to inject dye into me back to see what is going on. I was told i could end up as a cripple if i bleed. Anyone know about this
GENERAL anesthesia because with a spinal you'll wake up with a headache and pain you don't want that
I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?
NO ILL EFFECTS!!!
I also have vwd and get anemic easily. I am not prescribed meds and just take iron supplements when the bruising begins to show. I only have to take iron for a few days and it helps.
Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease
My whole life I have had horrible cycles! They last anywhere from 12- 20 days at a time. And they were every 3 weeks when I was younger. Now I’m in menapause(53 yrs old) and I only do it every 3 mos… read more
My son was diagnosed at age 6 with a qualitative platelet disorder. His platelets are missing the mechanism that causes them to stack. I recently decided his medical records and noticed that when they were doing his blood work for the diagnosis his fibrinogen level was too low also but they never told me that. Could this mean that he is also a factor 1 hemophiliac... or am I over reacting?
I have von Willebrand’s Disease type 2b. Since I had a partial hysterectomy my platelets have been extremely low (as low as 23000). I need a second opinion on why my platelets will not increase. Can anyone recommend a very very good hematology in NYC.
Check with the Hemophilia Treatment Centers at Mount Sinai or Cornell Medical Center
I have what appears to be blood vessels that break spontaneously in my fingers and feet. It burns for a while and then a black and blue mark appears. is this common in people with Von Willobrands Disorder?
Sounds like joint bleeds. I have it in my hands and arms and knees. But that’s exactly what happens, the burning and bruising is common with vwd usually what feels like arthritis pain follows.
My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.
My aunt was diagnosed in the 1950’s with moderate Factor VIII deficiency. She is 70 years old now. With the treatments that are currently available your daughter should do very well. You should get… read more
Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks
I believe there is a hemophiliac organization in all states that can help with payments and other things
You are very welcome! I did have a natural birth but the pain was rough, they wouldn’t give me anything for the contractions. Also, for post birth, make sure they do a follow up on your levels. My… read more
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