I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.
Sounds like a joint bleed to me I have a target joint and that’s how it feels when it begins. Or to me it does.
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
I take It. It’s factor 8 and has less things in it to react to is what I was told. I don’t feel as sick after taking it. Not sure what else you wanna know about it.
Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks
Your sister should coordinate her care with surgeon and Hemophilia Treatment Center closest to her. It may be wise to consider factor replacement therapy or at very leat Stimate.
Hi, my 3 year old son has moderate hemophilia, level 3.
He had a nasty bruise on his forehead that has swelled up to a golf ball size, and has rebled a little.
Apart from trans acid, is there anything any of you guys have used to stop the bleeding and support recovery?
We are very worried
Thanks so much
David
Is you son being treated by a Hemophilia Treatment Center(HTC)? You should check with the hematologists at the HTC nearest to you.
I noticed some petechiae spots on my abdomen and legs in May. The ones on my abdomen started to spread and get lighter in color in the center. One doctor said that I had ringworm. I started using Lotramin. The spots continued to spread. I went to see a different doctor. He thought that it might be Lupus, but my ANA was negative. My aPTT was 34, which was said to be high. My Factor VIII Activity was 37%. My von Willebrand Factor (vWF) Ag was 81%, and my vWF Activity was 63%. The doctor ordered… read more
Still no answers. The hematologist is sending me to a rheumatologist now.
I am curious, my husband has O negative blood and his friend also has negative blood. These are the only 2 hemophiliacs I know. I was wondering if there is a correlation with negative blood and hemophilia? Also, my husband has a MTHFR mutation, which makes his body less able to detox, among other things. I do not know about his friend’s status on this, but we found out through 23&me and genetic genie. Does anyone else know their status as far as blood type and/or MTHFR mutation, specifically 677… read more
Interesting question but I don't believe there is any connection between RH factor and hereditary bleeding disorders. Like you, I am O-neg. but that only means we are universal blood donors (like… read more
I am protein s deficiency and my levels are almost non existent
I am also protein c deficienc and it is almost unable to be detected.
I have been on blood thinners since September of 2011 I have had a p.e. and 2 small anyruisum. I have been trying to find out what this diagnosis means . I will take blood thinners for the rest of my life. I just can't get anyone to fully explain it to me
Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement
Yes. And they just forced me to find a pain management doctor, even tho I’ve been to two pain programs. The rest, ice, compression, elevation. I used light compression socks around the house like… read more
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