I bruise extremely easy with my May-Hegglin. Many times I have no clue what even caused the bruise. I like to wear skirts, dresses and shorts, but lately I dread wearing them because of my bruises and the reaction I get from others. I know I shouldn't care, but I don't want people to think I am abused either.
I don't take any meds for my condition.
got a packet from the non-profit chapter about this company and their product. was just wanting to see the reviews from people that i have connected to or a support group that i am in.
its derived from human based cells, from what i am gathering. just not sure on it as last i remember when they had tried something along that line the AIDS and Hep C outbreak occurred.
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!!!
Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?
Tremeau Phamaceutical is currently enrolling patients for study of a new Cox2 inhibitor for pain. Google them to see if there is a study site near you.
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
Keep your feet elevated.
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 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.
I’ve had a few and never had a problem
Isn’t pain relative to the person that feels it. Since I’ve grown up bleeding I don’t try to compare to a “normal” who hasn’t had regular bleeds. I only compare my pain to myself. So if you are… read more
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?
This happens to me often. I don't have VWD. I have May-Hegglin. It can be pretty painful. I have to be careful with certain types of doorknobs because the edge of the knob will cause this to happen… read more
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?
VWD and get petechia on my arms and chest.