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Hi, a friend of mine has been diagnosed with deep vein thrombosis. The doctors said that she has a factor five blood disorder that causes her blood to cloth more than usual. I have never heard about this condition, but it sounds very serious. I am very worried about my friend and the way this condition is going to affect her life. Do you know anything about factor five blood disorder? I would also like to know if there is anything I could do to help my friend.

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Hi, factor five blood disorder was discovered about fifteen years ago as the main reason for the abnormal blood clothing. It was discovered that conditions like deep vein thrombosis, pulmonary embolism and recurrent pregnancy loss are all a consequence off factor five Leiden disorder, which is the accurate name of this condition. I know a lot about this illness because a very close friend of mine is also suffering from this condition. She had a couple of miscarriages and the whole experience was very traumatic for me and I can't even imagine how she felt. It was very difficult to see her go through so much trouble for no apparent reason. It took doctors quite a while to determine that she suffers from factor five Leiden. Factor five is included in the process of forming blood clothing and is under control of two other factors. One activates factor five and the other is responsible for its deactivation. The abnormal blood clothing is caused because factor five does not react to the second factor. This condition is inheritable so your friend and mine got it from one of their parents. Fortunately there are medicines that allowed my friend to finally give birth to a beautiful little girl. The best thing you can do for your friend is to give her all the support you can and to show her that life is possible even with factor five Leiden.
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Hi, my name is Ashlee and I to have factor 5. Unless she has multiple operations for anything she has nothing to be worried about! The most pain you get in is when you run too long and your legs get heavy. I recently had an operation on my ankle and the gave me a needle that thinned my blood so that it wouldn't clot.

My father did almost pass away due to the condition and it killed all of my great uncles. But that was ages ago when they didn't know what it was and my dad had multiple operations on his legs.

I'm 15 years old and I didn't even notice that I had it! Let your friend know that everything will be fine and it shouldn't have any affect on her :). My auntie just gave birth on her first attempt so it isn't definate with you will have a few miscarriages first.

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both me and my mother have factor five and usualy they give you bloodthinners the help a little, but it makes you really sensitive to the cold. my mom often cant walk up the stairs because her legs hurt so badly .
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I'm a person with factor 5 blood disorder.

Doctors found this with my first pregnancy, when it was discovered I had a DVT in my left leg. I also miscarried due to a clot. In terms of lifestyle, factor 5 is easy to live with. I have to use blood thinners during pregnancy, and until 6 weeks post partum. I have a beautiful baby girl now :) Pregnancy is really the only thing it has complicated for me- but the only complication is having to use blood thinners.

Certain lifestyle changes help- ie, don't smoke, eat a healthy, well-balanced diet, drink plenty of water, and limit any alcohol drinking to "few and far between" as it may cause dehydration which would lead to clots developing.
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Also with what they are saying if you have major cuts your blood will not know when to stop and bruises cause your blood to clot much easier. I've known I have factor five since I was 11 and I'm now 16. I've really had to be careful cause I'm so called fragile but if your older and careful there is no worries just life your life normal

 

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My husband and mother n law have this. Both have had Dvt and PE. My husband is active. A runner and don't drink are smoke. The best thing to do is read up on it from reputable sites.
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I have factor five Lieden as well as 2 other types of clotting disorders. Unable to keep the Coumadin at theraputic levels, so am using Lovenox twice a day, shots in my stomach. Had three surgeries last year alone, totaling six since 2007. Going to Shan's Hospital in Gainesville, Fl to see another Hemoatolagist specializing in blood disorders. Pray that I am able to take a new pill in lieu of the injections. Stomach is black and stays sore all the time!.
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Merrile,

Hi, I am a 19 year old girl who was diagnosed with factor 5 about a year ago. I had ulcerative colitis and had four surgeries. On the last surgery I develpoed a blood clot in my jugular vein. From that, the doctors found my factor five. I live a normal life. I have to take a blood thinning agent, lovenox, injected into my legs or stomach. I have to be careful when I get pregnant and I can't take birth control. Other than that, I live a normal life. There is nothing you can do to help your friend except be there for her when she needs the support. Her life will need some adjustments but nothing major.

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. I hope your friend gets better! best of wishes!!

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I have factor V and trust me it is something to worry about I've had 3 strokes and a massive heart attack mine is being treated with 10 to 14 mg of Coumadin a day don't just blow it off as nothing

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I have also been diagnosed with factor five and antiphospholipid syndrome. what is the difference? the new dr. I got yesterday and he told me even tho. I looked fine on the outside, I was very very sick on the inside. I also have had a heart and a triple when I was 47. I am now 53 yrs. old.i was to scared to ask him if I was dying. I was in the hospital for six weeks until I checked myself out. it took my cumadin dr. to tell me what was wrong as my ruematologist never told me.i am on oxi. for pain and my new dr. id going to give me less oxi. next month and add morphine.i also take kalonopin for anxiety as I have a lot of panic attacks. what can you tell me? am I dying? will I live a long life if I take all my meds as im supposed to? ppl. in my family seem to die very young. my aunt had lupus but cancer killed her last yr. at age 56. my uncle died the yr. before at the same age. my other aunt died last may 22ed from a brain tumor. I am scared sh*tless. out of 13 kids, my poor mom at the young age of 70 has only one brother left. im afraid of dying as I don't think my mom could take it. not to mention, I love life now that I have quit drinking and started taking care of myself when I first got sick. I had to move back home with my mom due to this. plz. give me some answers! thank you!
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to the person with factor that is taking lovenox there is a drug out there called Xarelto. My hematologist told me it is basically tablet form of lovenox.
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Hello, I hope you were able to get the assistance you needed and are doing well. My uncle has factor 5 leiden and 2 other disorders as well. He found out about 10 years ago. Coumadin did not work for him either, then Lovenox twice a day 10. It worked well but, program ended and can no longer receive it because he cannot afford it. Xarelta did not work at all for him. Actually made it worse. Is now on Arixtra prescribed at 3 times/day 10 in the am 7.5 in mid afternoon and 10 again in the evening. However, the pharmacist at the company that makes it, and had a program for those who couldn't afford it, refuse to give him this dosage. No matter what documentation the doctor provides. 10 twice a day is the most anyone is willing to fill. Was wondering how the folks in Gainesville worked out for you. Thank you
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My mom has this blood clottind disease and we did not no it but she ended up in the hospital twice the second time it was bad we almost lost her the first time they did no that she had a blood clot but they wasnt sure how bad it was and they kept her for a week and then let her go home within 3 days she was back in there and this time was almost to late she was in the hospital for a month and it just didnt seem to be getting any better she had surgery after surgery and then they brought a specialist in and he found it so anyway they treated her and she is doing so much better they have put my mom on blood thinners for the rest of her life and i dont no if you believe but we had alot of prayers and they worked it can be very dangerous but they should be treating her for it and she should be able to live along and healthy life prayers for your friend
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I started on birth control pills per my gynecologist to help with pre menopausal symptoms i.e.: hot flashes and night sweats. After one month I developed a PE. In the ER my d-dimer was off the chart and they did the genetic test for Factor 5 Leiden, of which I was not only positive, but am homozygous. This means that both of my parents have it and each gave me an allele. Because I have two alleles, both of my daughters were given Factor 5 as well. It is extremely important to know your genetic history as now they both know they cannot take birth control or hormone replacement and must let doctors know when pregnant or having surgery. As far as my situation, I currently am managed on 5mg Coumadin daily to maintain an INR of 1.5-1.9 This level is just below the normal therapeutic level of 2 and has worked well for me. I am going on 7 years with this protocol without further incidence. For any major surgery I stop the Coumadin and utilize lovenox through a time period recommended by the doctor and restart Coumadin after the proceedure. I have not suffered any ill effects, I don't bleed profusely nor do I bruise any easier than I did before. My grandfather died of a blood clot after surgery years before I was diagnosed and I am certain he had factor 5 and is the one that passed it to my Mom. I am followed by a Pulmonologist and am pleased with my protocol. Seems more and more people are finally being diagnosed with this genetic blood disorder.
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