I have type 1 von willebrands disease it is not bad doesn't really effect me but I'm getting teeth out so I will need treatment. They think my mum and 2 sisters have it to so they need to be checked out.
I have had von willebrand and Glanzmann's thrombasthenia at the age of 1 but these of 6 months i have been in hospital and had 8 operation on my nose because of severe nose bleeds i have had 2 meters of nose ribbon packs socked in Whitehead’s Varnishy.But now i can stop my nose bleeds buy tranexamic nasal drops and xylometazoline spray and the holding it for 25mins
I had nose bleeds so bad it would come out my eyes, my sister and bro never got nose bleeds, my mom got a few and they all were diagnosed with it and I wasnt go figure??? yet i did have my fingure up my nose all the time.
I have a mutation of vWD in which I am qualitative and quatitative, and I have no treatment. I am also allergic to Alphanate, and Humate P, which are factors used in the treatment of vWD. Apparently there has not been a case of a person with qualitative and quantitative deficiencys before, because the the types are set up, 1-3, Type one and three are quantitative, while type two is qualitative, so I have a brand new type, with no treatment whatsoever. Most of my bleeds last seven to eight hours.
Hello, I have a very rare form of von willebrand. Its AVWS (ACQUIRED von willebrand syndrome) I have very low von willebrand factors as well as very low factor VIII. IVIG (immunglobulins) are given to get through a surgery without bleeding to death. No doctors are aware of this disorder. I do not get treatments. A accident will probably cost me my life. Its been a nighmare!
It is common for both parents to either have this bleeding disorder in active form or be carriers if one or two children get active symptoms. Type one is mild and common. I have some symptoms, I've been tested and I'm in the low end of normal ranges. HOWEVER, stress raises Von Willebrand factor in the blood so even if you think you're at least in the normal range, you more than likely are not.
My father is being tested for this disease and he needs a heart bypass and aortic valve replacement. He's currently in the hospital and the doctors have had to postpone the surgery twice because they are trying figure out a way to get his blood to clot better. His "factor" (?) is still over 300 even though they have tried IV meds to resolve this. The surgery is still too risky at this point. I'm not sure what they're going to do. Meanwhile, my Dad is in the hospital being tested and tested...
my daughter has severe von willebrands. the nasal spray did not work for her. she needs a factor shot humate P. its terrible. her dad has a mild case.
I have type 1 von willebrands disease it is not bad doesn't really effect me but I'm getting teeth out so I will need treatment. They think my mum and 2 sisters have it to so they need to be checked out.
TyanaMcc 2 months ago
@TyanaMcc so do i :o
iLoveYouTupacShakur 2 months ago
I have had von willebrand and Glanzmann's thrombasthenia at the age of 1 but these of 6 months i have been in hospital and had 8 operation on my nose because of severe nose bleeds i have had 2 meters of nose ribbon packs socked in Whitehead’s Varnishy.But now i can stop my nose bleeds buy tranexamic nasal drops and xylometazoline spray and the holding it for 25mins
16atta 2 months ago
I had nose bleeds so bad it would come out my eyes, my sister and bro never got nose bleeds, my mom got a few and they all were diagnosed with it and I wasnt go figure??? yet i did have my fingure up my nose all the time.
ty1977 7 months ago
I have a mutation of vWD in which I am qualitative and quatitative, and I have no treatment. I am also allergic to Alphanate, and Humate P, which are factors used in the treatment of vWD. Apparently there has not been a case of a person with qualitative and quantitative deficiencys before, because the the types are set up, 1-3, Type one and three are quantitative, while type two is qualitative, so I have a brand new type, with no treatment whatsoever. Most of my bleeds last seven to eight hours.
illkillallthepeople 1 year ago
Hello, I have a very rare form of von willebrand. Its AVWS (ACQUIRED von willebrand syndrome) I have very low von willebrand factors as well as very low factor VIII. IVIG (immunglobulins) are given to get through a surgery without bleeding to death. No doctors are aware of this disorder. I do not get treatments. A accident will probably cost me my life. Its been a nighmare!
majolica46 1 year ago
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It is common for both parents to either have this bleeding disorder in active form or be carriers if one or two children get active symptoms. Type one is mild and common. I have some symptoms, I've been tested and I'm in the low end of normal ranges. HOWEVER, stress raises Von Willebrand factor in the blood so even if you think you're at least in the normal range, you more than likely are not.
Billysrose71 2 years ago
Comment removed
Billysrose71 2 years ago
This is in our family. My younger son has it and will be going into the hospital on Monday for a trial treatment. I have symptoms too.
Billysrose71 2 years ago
My father is being tested for this disease and he needs a heart bypass and aortic valve replacement. He's currently in the hospital and the doctors have had to postpone the surgery twice because they are trying figure out a way to get his blood to clot better. His "factor" (?) is still over 300 even though they have tried IV meds to resolve this. The surgery is still too risky at this point. I'm not sure what they're going to do. Meanwhile, my Dad is in the hospital being tested and tested...
hojofan 2 years ago
i have it
SailorMoonProduction 2 years ago
my daughter has severe von willebrands. the nasal spray did not work for her. she needs a factor shot humate P. its terrible. her dad has a mild case.
STEPHHEARD147 2 years ago
i have von willebrands disease too and the nasal spray doesnt work for me either!
ohxmyxjonasx3 2 years ago