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-   -   Factor V Leiden - anyone have it? (https://www.healthboards.com/boards/blood-blood-vessel/26961-factor-v-leiden-anyone-have.html)

acbuchan 05-09-2003 10:13 AM

Factor V Leiden - anyone have it?
 
Hi just wondering if any of you knowledgeable sould knows anything about Factor 5 Leiden? I have it and so does most of my family and children. Just wanting to know more, not easy to find on the net, I keep just finding the factor 5 not the Leiden bit. Thanks

SnowyLynne63 05-09-2003 01:48 PM

Type it in your browser,you'll find it..........

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Lynne

acbuchan 05-10-2003 06:37 AM

Im sorry perhaps I should have been more specific. I have looked through the information on the net.What little there is, considering how prevelent factor V Leiden is. I was wanting a more personal opinion really. Like what is it like to have it,i.e anyone who has had problems, are they that frequent, problems in pregnancy (it has been suggested to me that that is why my son has a muscular/neurological disorder, they think that maybe somehow he developed a clot? or I passed one one through the umb. cord. Anyway I was just seeking personal opinions, not cold computer generated stuff - that at the best of times is confusing medical lingo. Thanks

jcove 05-23-2003 08:33 PM

I don't know if this helps any but when we were told my son had a stroke inutero they did many tests and of course some were blood tests at the hemotologist's office. My son was tested for the factor 5 leiden and we were told that was why he had the stroke. My older son was tested as well and was positive as was I who passed it on to them. My oldest was and is fine. We were given a list of things that they both need to stay away from in order to not get blood clots. To our surprise after a miscarriage we found out the stroke was not from that it was because my husband has an antigen in his blood that I do not. So my body makes antibodies to fight the foreign antigen. We are now in the low percentage of NAIT patients (neonatal alloimmune thromboyctopenia) So basically the information we were given by the hemotologist did not mean a thing because after further testing and seeing a high risk doctor we found out other info. The high risk doctor also said there has never been a case where a child has suffered a stroke due to this blood problem. Who knows?
Jcove

GiMMiE BiG MaC 05-25-2003 07:55 PM

hi i have factor 5 lieden. i just found out i had it like last year i think and dont really know much about except that it couses blood clotting. im not supposed to take things like birth control pills and my mom has it and has to take coumadin. that about all i know. can someone tell me some more about it like what causes it? is it rare? and i also wanna know if its an autoimmune disorder and if it is, what is it that ur body is detroying? i cant really find much information about it online. thanx...

GiMMiE BiG MaC 05-25-2003 08:43 PM

o yeah another question lol sorry. if i have factor 5 lieden, does that make me a hemophiliac?

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-skit

acbuchan 05-26-2003 05:38 AM

Hi, I dont really know much about it either but have learnt a few things. Apparently it is very very common, most people just dont know they have it. It does not mean that you are a haemophiliac, as they are people who bleed excessively, and factor 5 Leiden have problems with clotting, if you were factor 5 (not Leiden) then you could have bleeding problems, but the Leiden bit means clotting. It also depends on the degree of severity, it can vary from mild to severe, the blood test should have been able to tell you that. I am still waiting for my degree test to come back ,it can take a few months. My grandfather died from a clot in his heart, and my aunty has a clot in her leg which could have been fatal if not found. My mums friend discovered he was factor 5 Leiden when he suffered and anurism (sp?), in the brain. But from what I gather these event depend on the degree and how sensible a life you lead. Also the avoidence of things like the pill, and smoking etc. Good Luck! Oh also as far as I knowe it is not an autoimmune disease, but my mother also interestingly enough has multiple autoimmune diseases aswell. So do other members of our family in one form or another.

[This message has been edited by acbuchan (edited 05-26-2003).]

GiMMiE BiG MaC 05-26-2003 07:05 PM

hi. thanks so much for that info. everywhere i checked, it said that factor 5 lieden was a autoimmune disorder, but i wasnt sure. because i thought that it destroyed some part of your blood that decreased the chance of a blood clott forming...?? i have now idea what my level is or w/e. idk if the doctor even told me and my parents but..if they did i dont remember..again thanx for the info.

bettybygosh 07-13-2003 12:35 PM

factor V lieden
causes a blood clotting disorder. what happens is that the gene fvl is mutated, it is a point mutation thought to have been helpful in keeping people from hemoraghing centuries ago. all of us with fvl come from that one person.fvl causes a change in the blood cascade. it changes arginine to glutamine?, instead of what it should change it to. thus causing protien c to resist cleavage to the site it is supposed to cleave to.it is similar to pac man, the top part is protien c the bottom protien s, together they eat the excess clotting factors floating around in the blood stream. either one of these protien deffiencies c or s will cause excess clotting. which can lead to dvts, embolisms, etc. anticoagulation therapy is the only known way of handling this common genetic hiccup. professor dahlback in sweden found this blood disorder 7 or 8 years ago. if you want to find out more just look up his name,at lund university. also scientists are just beginning to do gene therapy, someday if they perfect it it may actually be a cure.

angelmagic 07-29-2003 04:15 PM

Hi, I was diagnosed with the same problem 2 yrs. ago. I went for minor surgery on my toe and about 1 month later i landed back in the hospital with a blood clot that had developed from my ankel to my groin, the pain was so severe, the doctor told me i was lucky it didnt start attacking my liver. Anyway, I was on coumadin for six months and they did several tests once i was better. My doctor told me i had FACTOR V LIEDIEN MUTATION or ACTIVATED PROTIEN C. She told me its a bad gene passed down from one of my parents, she quickly took me off the birth control pill and told me to quite smoking. I was also told that when i decide to get pregnant i will have to give myself a needle of heparin(blood thinner)everyday during the pregnancy cause im at a higher risk of clotting. And then after the pregnancy i would have to go on coumadin for a while. It really sucks having all these extra precaution and things to worry about, cause im kinda scared to get pregnant now. They also told me i was at a higher risk of having a premature baby or still-born, so you can see why i kinda freaked.
:angel:

bettybygosh 07-31-2003 06:16 AM

to angelmagic
i too have fvl, apcr. i had 3 babies and lost 2. the reason you are at a higher risk is that between the change in hormones during pregnancy and having a genetic disorder it can cause a host of problems, listen to the drs and you should do ok. also there are other blood clotting disorders that need to be ruled out, factor v lieden goes hand in hand with acitivated protien c resistance, although you can have apcr without having fvl. a small percent do, then there is protien c and s deficiency where you dont make enough of c and s and there are a few others, you shouldhave a genetic assay done to rule out other disorders, when you have more than one blood clotting disorder you obviously run a higher risk of clotting. i suggust genetic counseling for anyone getting tested and it is a good idea for all women with fvl-apcr and other clotting disorders to stop the pill, smoking, and to think twice about hormone replacement therapy. drinking alot of water and not being a couch potatoe is very beneficial too. good luck

Micheybell 07-31-2003 11:19 AM

acbuchan - I know there are a few woman on the pregnancy board who have Factor V. They take blood thinners for it. Also some of them have had miscarriages and the dr. says that Factor V causes miscarriages if it's not being treated. I'm actually going to go get tested for it b/c I've had 2 consecutive miscarriages .. and I've already been tested for alot of other things. I hear it is more common than you think.

Good luck.

angelmagic 07-31-2003 08:29 PM

[quote]Originally posted by bettybygosh:
[b]to angelmagic
i too have fvl, apcr. i had 3 babies and lost 2. the reason you are at a higher risk is that between the change in hormones during pregnancy and having a genetic disorder it can cause a host of problems, listen to the drs and you should do ok. also there are other blood clotting disorders that need to be ruled out, factor v lieden goes hand in hand with acitivated protien c resistance, although you can have apcr without having fvl. a small percent do, then there is protien c and s deficiency where you dont make enough of c and s and there are a few others, you shouldhave a genetic assay done to rule out other disorders, when you have more than one blood clotting disorder you obviously run a higher risk of clotting. i suggust genetic counseling for anyone getting tested and it is a good idea for all women with fvl-apcr and other clotting disorders to stop the pill, smoking, and to think twice about hormone replacement therapy. drinking alot of water and not being a couch potatoe is very beneficial too. good luck[/b][/quote]
To Bettybygosh
Thanks for the info, its kinda scarey not knowing exactly what this blood disorder entales. I'm still learning as much as i can before i plan a family. Do you mind if i ask you if you were on any sort of blood thinners during and after your pregnancies, and were you at any health risks with your pregnancies? If not thats cool but if so... it would be greatly appreciated. Thank a bunch!!
:angel:

bettybygosh 08-04-2003 04:25 AM

dear angel
i am 43 years old, my oldest son is 21, my daughter is 19 and my baby is 18. when i had my eldest i had already had a lifetime of clots, noone knew why, it was thoutght to be just an environmnetal kind of thing, meaning i acquired it. i knew that it was something else, i have 6 brothers and sisters and noone else had it. wierd huh. actually i only have 1 full blooded brother so that made more sense. the gene came from our father. when i had my eldest, i was told that having children would be detramental to my health. i clotted after he was born, back then they didnt use heparin, low molecular weight heparin, like they do now. with my daughter i had no clots, but with my last child i did. the wierd thing is that both my sons are postitive for fvl and my daughter is negative. we were genetically tested a few years ago. i was told by my hemo specialist that my kids are miracle babies, that we fvlers have high risk pregnancies. i lost two . i think they will find that because we clot that of course our babies will inside of us, if not them then the umbillical cord, or surrounding tissues also my last child had intraunterine growth retardation, he was a gift, that means there is a clot somewhere and the baby doestnt grow right. i carried him full term and he is now 6 foot 3 and 185 pounds. so get a good team together, interview them, as to what they know and then take a year to get really healthy, walk alot, rest alot, and good luck with getting pregnant. it can happen and it was worth the risk for me to have a family, alternately though, every child you have has a fifty fifty chance of getting your gene for fvl. i didnt kknow that i had it when i got pregnant, i dont know if i would have adopted instead, good luck betty

angelmagic 08-04-2003 02:51 PM

[quote]Originally posted by bettybygosh:
[b]dear angel
i am 43 years old, my oldest son is 21, my daughter is 19 and my baby is 18. when i had my eldest i had already had a lifetime of clots, noone knew why, it was thoutght to be just an environmnetal kind of thing, meaning i acquired it. i knew that it was something else, i have 6 brothers and sisters and noone else had it. wierd huh. actually i only have 1 full blooded brother so that made more sense. the gene came from our father. when i had my eldest, i was told that having children would be detramental to my health. i clotted after he was born, back then they didnt use heparin, low molecular weight heparin, like they do now. with my daughter i had no clots, but with my last child i did. the wierd thing is that both my sons are postitive for fvl and my daughter is negative. we were genetically tested a few years ago. i was told by my hemo specialist that my kids are miracle babies, that we fvlers have high risk pregnancies. i lost two . i think they will find that because we clot that of course our babies will inside of us, if not them then the umbillical cord, or surrounding tissues also my last child had intraunterine growth retardation, he was a gift, that means there is a clot somewhere and the baby doestnt grow right. i carried him full term and he is now 6 foot 3 and 185 pounds. so get a good team together, interview them, as to what they know and then take a year to get really healthy, walk alot, rest alot, and good luck with getting pregnant. it can happen and it was worth the risk for me to have a family, alternately though, every child you have has a fifty fifty chance of getting your gene for fvl. i didnt kknow that i had it when i got pregnant, i dont know if i would have adopted instead, good luck betty[/b][/quote]
dear betty,
wow! thanks so much for all your information and input. with having this unrare blood disorder its so hard to explain to other people when i don't exactly know too much about it. i find it very comforting to be able to talk to other people with the same problem (such as yourself) about this disease. i'm glad to know you have successfully had children and i agree that they are miracles. i'm 30 and i've been juggeling the idea of children for some time now because i wasn't quite sure what to expect. but talking to you has brought new light on my future decision. thank you soooo much, talk to ya soon.
:angel:


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