Von Willebrand's disease (bleeding, eye, medical, ears)

[philosophy81]

Anyone ever hear of or know of anyone having this?

[Suzet2262]

I have never heard of it before, so I looked it up, here is a link for anyone who wants to read about it.

Von Willebrand disease Information on Healthline

[ontheroad]

I knew many people with Von Willebrand's disease, and in fact I have a form of the disease--a platelet deficiency that mimics it but is not as serious.

Did you want any particular info?

And, you might want to check this site.. The foundation addresses all bleeding diseases.

[brokensky]

I have VW. So does my father. Do you have questions I can help you with or direct you to resources (i.e. medical help?).

[Lbervis]

Hello!!! My name's Lily I have VonWillebrand's type 1, and I also have a factor 8 deficiency. I was diagnosed when I was 4; I'm 21 now...if you have any questions let me know...but first things first so u know in the US alone there are over 2 million ppl with VWD that don't even know about it yet so keep an eye out for them! We have a very extensive community in the US with the NHF (national Hemophilia Foundation) they have Handi which can give you books and pamphlets of info about ur VWD and it has meetings where u could meet tons of other ppl with VWD! hope this was help full


[Mod Cut]

[csi4u]

Originally Posted by philosophy81

Anyone ever hear of or know of anyone having this?

I just came across this site for the first time and your question grab my attention. I have this disease and it can be very deadly, just stating the facts. Everytime, my physican mention surgury, I just lose my mind, and then i get everything in order. What i mean is, I tell everyone i love this one i might not make it, and i get my last rites, i am catholic. no one ever heard of this disease when i was younger, until i was 23 years old and had to have surgury and had to be brought back, that is when i was told i had a bleeding problem. i was finally diagnois about 20 years ago, when it had a name. I am 46 years old now and getting really to under go bilateral tmj reconstruction of my face, car accident years ago, broke my rt side of my face and the bone structure has deteroiate, so i don't have a choice in this one, hard to open, and eat properly. This disease i try to do fundraising and awares of this disease especially to women, it is not normal for a young women menstrual cycle to last 18 days a month. It is not contagious please, so if you know of someone who has it, be very nice, because they are going through enough with this disease. You might not think twice when you get a small cut but me will the last one i had i soak through 2 bandages and one hour later had to call my husband to bring me my medication which has to be in the refrigerator and it finally slow up but it still bleed slowly for approx 4 hours. This was a just a puncture small wound no bigger then a paper cut would be, you would have thought the way it was bleeding i would have need stiches, but you could barely see it after the bleeding stop. I can't have children, very high risk, there are different levels of this disease but i don't know what level i am until i start bleeding, i tell everyone it has its own mind and mood, what ever it feels like doing, it will do. i hope i have been some help. take care jo

[Viralmd]

Originally Posted by csi4u

I just came across this site for the first time and your question grab my attention. I have this disease and it can be very deadly, just stating the facts. Everytime, my physican mention surgury, I just lose my mind, and then i get everything in order. What i mean is, I tell everyone i love this one i might not make it, and i get my last rites, i am catholic. no one ever heard of this disease when i was younger, until i was 23 years old and had to have surgury and had to be brought back, that is when i was told i had a bleeding problem. i was finally diagnois about 20 years ago, when it had a name. I am 46 years old now and getting really to under go bilateral tmj reconstruction of my face, car accident years ago, broke my rt side of my face and the bone structure has deteroiate, so i don't have a choice in this one, hard to open, and eat properly. This disease i try to do fundraising and awares of this disease especially to women, it is not normal for a young women menstrual cycle to last 18 days a month. It is not contagious please, so if you know of someone who has it, be very nice, because they are going through enough with this disease. You might not think twice when you get a small cut but me will the last one i had i soak through 2 bandages and one hour later had to call my husband to bring me my medication which has to be in the refrigerator and it finally slow up but it still bleed slowly for approx 4 hours. This was a just a puncture small wound no bigger then a paper cut would be, you would have thought the way it was bleeding i would have need stiches, but you could barely see it after the bleeding stop. I can't have children, very high risk, there are different levels of this disease but i don't know what level i am until i start bleeding, i tell everyone it has its own mind and mood, what ever it feels like doing, it will do. i hope i have been some help. take care jo

I don't know where you live, but I'm older than you and even when I was just starting out, over 30 years ago, this was a well-described entity...So it's not really accurate to say that it wasn't known about.

[starreve]

Originally Posted by Lbervis

Hello!!! My name's Lily I have VonWillebrand's type 1, and I also have a factor 8 deficiency. I was diagnosed when I was 4; I'm 21 now...if you have any questions let me know...but first things first so u know in the US alone there are over 2 million ppl with VWD that don't even know about it yet so keep an eye out for them! We have a very extensive community in the US with the NHF (national Hemophilia Foundation) they have Handi which can give you books and pamphlets of info about ur VWD and it has meetings where u could meet tons of other ppl with VWD! hope this was help full


[Mod Cut]

I have been told i have this exact ype factor 8 deficiency but then i also have been told i haven't but my question is do you have problems with your menstrals? I will bleed to death if i let myself i usually end up in the hospital after 2 months of steady bleeding i have had 5 transfusions and been to hemotologist and so far no help has come my way.

[czardoust]

my oldest child has this. she has Type 2A VWD, involves heavy, long menses and sweating blood. Does anyone else sweat blood when under extreme physical or emotional stress?