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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 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.
Hi, David. I have been at Cardeza Foundation at Thomas Jefferson for decades. Chris Ramsey
Have any women on here gotten pregnant with vonwillie brands disease... I'm not pregnant that I know of and have a few questions
Well, I've had a LOT of pregnancies...and kids...I did have one pregnancy where I continued to have periods and did not test +, even though I was CLEARLY pregnant (three months when I went to the… read more
Yes it took me 6 months from the day I applied for SSI & he qualified..having vonwillebrand.he has a life expectancy..
My son is a moderate factor viii deficient hemophiliac. He was born in March and it was discovered before his scheduled circumcision and after it was discovered, they were not willing to proceed. Where we're from, circumcision is very common (our pediatrician says 80%+) but doctors with experience with hemophilia is few and far between. I was hoping to get some input from someone living with hemophilia and how you feel about this issue. We are able to travel to a facility more capable of… read more
any procedure is pretty much okay as long as you were adequately provided Factor
I'm grateful I survived the many times I came close to death since I was 5 yo in 1949. I don't worry about it unless a doctor insists I do some procedure I know would be risky...then I'm adamant about… read more
Besides occasionally eating I take a daily multi-vitamin/mineral supplement as others mentioned. Also supplements like Types 1, 2 & 3 collagen for bones, joints and cartilage, L-Carnitine amino acid… read more
Hello. I’m living in NYC can not find an oral surgeon that will do work on a hemophiliac. Any help please.
I like Dr. Mahjoubi. She did my wisdom teeth op
Anyone else have young kiddos with this?
My daughter has Type 1 we haven’t had any serious incidents thank God. I’m type 3 and it’s a whole different world. My niece nephew sister and mom all have type one and they are all relatively normal… read more
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