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

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

------------------
Lynne

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

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

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...

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

------------------
-skit

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).]

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.

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.

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.
http://www.healthboards.com/ubb/angel.gif

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

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.

Originally posted by bettybygosh:
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
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!!
http://www.healthboards.com/ubb/angel.gif

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

Originally posted by bettybygosh:
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
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.
http://www.healthboards.com/ubb/angel.gif

Hi:

I am 39 with two children. The first was a "normal" pregnancy. Then 3 months later after I had started birth control (two weeks to the day) I had a pulmonary embolism. VERY painful. In the hospital for a week. I got off birth control immediatly and despite other efforts was pregnant again within months. That pregnancy was deemed "high risk", but we both came thru it fine with Heparin shots twice a day. I even had a csection and all went well. My doctor says that I need to take an asprin a day and that is about it. My problem is: Now that I know that I have FVL, I cannot get health insurance, at least not with the companies I have applied to. Do any of you know who would write health insurance for a self employed person with FVL?

Thanks!

hi everyone
just a note to let people know that you can still get a blood clot on coumidine, i was working outside last week and had a pulmonary embolism , clot broke off from my leg and you all know the rest. i went to the hospital and had a greenfield filter put in, it was a piece of cake the surgeon and pulmonary specialist at the hospital say if you have fvl and have had an embolism, good idea to get one put in and get a team together to follow you who are educated in fvl and related problems. i am home after 6 days, waiting to get my levels up to 3.5 or 4.0 my i.n.r. was at 3.0 when i got the clot, so all you people out there be careful and stay active and healthy and get your team together and educate yourself, i am going to be starting a web site sort of a clearing house for the latest in research, genetics and hemo. the drs said they will contribute so i will let you all know when i get back from boston follow up. good luck to all

angelmagic....sounds familiar. i found out though, by having a bout of ischemic colitis (clot to the colon). I have a healthy 7 year old daughter, had no problems (don't know if i had factor 5 lieden then???), but i want to have another & was told i'd have to have an injection of heprin throughout the pregnancy. I also had to go off the pill & was told to quit smoking. Thats my question for you....did you quit & if so, how? i don't want to go on the patch because i want to get pregnant. i know once i find out i'm pregnant i'll quit, but until then, i'm having a hard time...i did cut down to about 4 or 5 cigs a day. any thoughts? thanx.

Originally posted by paperclip:
angelmagic....sounds familiar. i found out though, by having a bout of ischemic colitis (clot to the colon). I have a healthy 7 year old daughter, had no problems (don't know if i had factor 5 lieden then???), but i want to have another & was told i'd have to have an injection of heprin throughout the pregnancy. I also had to go off the pill & was told to quit smoking. Thats my question for you....did you quit & if so, how? i don't want to go on the patch because i want to get pregnant. i know once i find out i'm pregnant i'll quit, but until then, i'm having a hard time...i did cut down to about 4 or 5 cigs a day. any thoughts? thanx.
Hi Paperclip! Ya know, it wasn't easy, but it sounds like your on the right track if your down to 4 to 5 a day. That's how I quit, I just told myself I wasn't buying another pack after this one is finished. I work out of my home so I had to find something to keep myself busy when I got that craving, so I would hop on my tread mill. Not for long, maybe 10 to 15 minutes, just enough to take off the edge, and get rid of the anxious feeling of wanting to light up. Just think of this, you'll be alot healthier without it, think about your health. I know its hard but you can do it if you put your mind to it!! I feel sooo much better without it!! Next time your trying to quit just ask yourself if you control that cigarrette or does it control you? Good luck, I hope this helps, I'm here to help support you all the way, you can do it girl!!
http://www.healthboards.com/ubb/angel.gif

I was diagnosed with Factor V Lieden back in April 2003. 4-5 years prior to that, I had been hospitalized for DVT (Deep Veinous Thrombosis) in my left leg and embolis in my lungs. There wasn't much follow through at that time. In April 2003, I was hit with the same thing. A strange coincident was I was hospitalized and the time the news was airing the funeral of David Bloom (Reporter that died in Iraq from DVT and embolis). This time the test showed that I had Factor V lieden. The terms used were "genetic mutation" and "anomaly". I was also told that FVL makes one 7 times more susceptible to DVT.So now I take a daily dose of 10-12.5 mg of Warfarin Sodium for the rest of my life. Later that year, my brother was hospitalized with a clot in his right leg. I suggested he get check for FVL. He said the test came back negative. I told him to get a second opinion. My family seems to be prone to circulation problems. As far as what causes this "genetic mutation", I'm not sure. In talking with my parents about it, I brought up the facts that my father use to handle atomic bombs in the military and my mother remembers seeing mushroom clouds, from testing in Nevada, rise above the mountains in Utah when she was a girl. My mother has M.S. I should probably do more research on this being that it will be with me for the rest of my life. Sorry for ramblin'
.
:bouncing: :jester:

Hello, I also recently found out on top of my anti-thrombin III deficiency I also have Lieden V disease. It is a missing protein in our blood. It is a inherited disease, my 32 year old brother died before we were diagnosed, with multiple pulmonary emoblism. I have had many, many, episodes a huge mesenteric vein thrombosis that damaged my small intestine so it is difficult to absorb nutrients from food, I must eat NO chemicals at all, since this causes great pain in my abdomen. It was in my liver, gallbladder, spleen, stomach, small intestine, pancreas, and it was a miracle I survived! Since I have had pulmonary embolism, have taken a medical trial where I used lovenox injections in my tummy twice a day for two years, I lost 1 inch and bone mass, so that turned out not to be a good remedy, I take coumadin, but have gotten clots while taking it and been within the correct INR too. They say that Lieden V is somewhat coumadin resistant but is the only thing to treat this with. I am a 54 year old woman who has had problems with clotting since age 20. I have had 16 surgeries over the years since each organ one at a time gets a clot, lost both ovaries to blood clots, then a hysterectomy, had 1/3 of my large intestine removed due to pre-cancerous polps. Lung surgery, and on and on, after each episode of surgery I naturally get my normal bloodclot as well. I am going to the Mayo Clinic soon to find out if I can learn more and see what they can do or at least find out what is wrong with me. I weigh only 103 lbs used to weigh 125 and am 5'5, I am wasting away. Eating is difficult when you know you will have pain. So I eat only once a day, something has to give. I have been researching my blood disorder for many years, I will have answers soon to the Lieden V disease as well. I hope I have helped somewhat as far as clearing things up. Hope to meet some people I can relate to out here, thanks for having me. Dawn

Hi,
My best friend was diagnosed positive after reccurent blood clots ! now
He is taking oral anticoagulant drugs and he must check the boold fluidity every weeks or 2 :eek: . I tried to find some website about the treatment of factor V mutation by gene therapy but didnt find any article ! i tried lun uinversity nothing ! Any one know where are the research on of this genetic disorder ? :confused:
thanks

hey all--
My MIL was diagnosed w/this after ankle surgery-whe then developed blood clots. My SIL and niece got tested right away and are both positive for FvL. My husband refuses to get tested--his mom told him there was "no reason to get tested; there's nothing they can do about it anyway." I was told they will test the kids only if the parent is tested first and is positive. DOes anyone know if this is part of routine pre-surgical bloodwork? It probably isnt'--but it's just a thought--2 of my kids have had eye surgeries--w/no complications.
Thanks, HE

Hello, I was recently diagnosed with one gene for factor five...my proc and s are borderlind and my tPA activator test came back abnormal. Does anyone else have all theses factors wrong with them? Has anyone had problems being a carrier of one bad gene. Also how long do blood clots stay in your body? Thanks for any response.

Hi ,I was diagnosed after my daughter had blood clots go to her lungs and almost died back in 1997.Factor V was something that most Doctors did not have a clue about back then. I was lucky enough to take her to Ohio State University hospital where they figured it out.

my father in law has Factor V and his blood won't think even with Caumidin (sp). He was hospitalized the first of the year and almost lost his life due to anemia and the blood being so thick evne being on these high levels of blood thinner. He had a heart attack at the age of 39 and now they know why. His whold family has a history of early death. So the specialist insisted on all his children to be tested...Every one is positive except my husband. The main problem with Factor V ..we were told is that you can have a stroke or heart attack with no warning signs. It's a very serious condition. My husband's dad has now recovered from the anemia scare but he has so much pain in his legs from the blood clotting. He has been hospitalized for DVt and other things prior to this diagnosis. Factor V is something NOT to take lightly. It's very serious. For years this has passed down from generation to generation with them and no one knowing why they were dyin so young...Heart attacks and strokes ...Just all of a sudden. Well...My father in law was the one who FINALLy took the needed measures to find out why and what it was. I have a paper on the conditions but you can also find it on the net under Factor V Blood disoders also. I looked it up when they discovered it.

http://www.ihtc.org/Disorders/factor.html



http://www.thrombosis-charity.org.uk/aboutthrom_thrombophilia_congenital_prot einc.htm

http://www.actpathology.act.gov.au/c/ap?a=da&did=1008510&pid=1059373329&sid=

Thank You For Your Help!!! I'll Look It Up.

I also have FVL and was first diagnosed 8 years ago. I had DVT in one leg and the circulation isn't that good anymore. I now have developed vertigo. Anyone else have vertigo along with FVL?

hello everyone, my name is erica and i am 19 years old and was diagnosed with dvt in the left leg about 3 weeks ago. the doctors had no clue what had caused my blood clots. i had one blood clot in the groin and one in the left calf. they soon did genetic testing and found out i have factor v leiden. after reading everyone's post about this disease, i am sort of very scared, and maybe some what confused. some of you said you had pregnancy issues, does that mean when i get married and decide to have a baby that the baby and i will be at risk of blood clots? do people who have fvl have to stay on coumadin forever? what can i do to prevent clotting even though i am on coumadin? does anyone know if it is normal to have an extended period while on coumadin? usually my period only lasts me 5 - 6 days, but this is my first period since i was put on coumadin and i am on my 8th day already. is this weird, or normal? also, does anyone know if the swelling goes down after having dvt in the leg? it went down a lot already but whenever i walk on it, it gets a little swollen. i would appreciate it if anyone can answer any of these questions for me. thanks a lot.

erica

Hi There Everyone-

My name is Jennifer and I have Factor Five Leiden. I was diagnosed six years ago, after being admitted to the ER for syncopal episodes. It took Nine Physicians almost two months to figure out what was wrong with me; I had multiple pulmonary emboli or several blood clots in my lungs. I am now on coumadin for life and have yet had a recurrence.
I have researched this disorder for several years and have written articles for medical journals as well as WebMD. Unfortunately, not much research has been done on this disorder and many questions go unanswered. They know my episode six years ago was due to my pregnancy and also the fact I was on Birth Control Pills. Individuals who have Factor Five usually know they have it when pregnant, on any type of hormone therapy, or even when they end up with blood clots somewhere in their body. I have seen the top physicians in the United States for answers and they still, till this day, are arguing over whether or not I should have a Hysterectomy. I have had three miscarriages and am being told never to get pregnant again.
I came across this message board tonight and really have something to tell those affected with Factor Five. In my research, I have found that there isn't much research out there for this disorder. I also know that some websites are giving out incorrect information as well as doctors who know nothing of the subject. So please, if you have any questions PLEASE ask a knowledgable Doctor about this disorder! And Take Care of yourself.

Erica-
To answer some of your questions, because you have Factor Five Leiden, you will be considered a high risk pregnancy. I was placed on Lovenox before getting pregnant so that the coumadin would be out of my system. Coumadin can cause birth defects to a fetus. I was told be several doctors that I will be on coumadin for life but I have asked them to take me off and see what happens. Of Course, they are against this.

Erica-
To answer some of your questions, because you have Factor Five Leiden, you will be considered a high risk pregnancy. I was placed on Lovenox before getting pregnant so that the coumadin would be out of my system. Coumadin can cause birth defects to a fetus. I was told be several doctors that I will be on coumadin for life but I have asked them to take me off and see what happens. Of Course, they are against this.

Thanks a lot for the information.

erica