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Q: Leiden Factor V
asked by: AshleyHalby on September 24th, 2007
New User
I am a 23 year old female that was diagnosed with the genetic blood clotting disorder Leiden Factor V 3 years ago. I do not have much information on this so I was wondering if anyone as heard of this and has some info on it. I have been having a lot of pain and spasms in my legs and feet and I have been wondering if this could be related. I have only had one clot and it was not in my leg. Please help!
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tedsgirl
replied on September 29th, 2007
New User
I Have Factor V
Hi AshleyHalby,
I am 21 and also recently found out I have Leiden Factor V because my 50 year old father had his first blood clot so I was tested since it's hereditary. I have no symptoms. I did see a hemotologist who was very re-assuring and helpful. He said make sure not to take long car trips (more than 2-3 hours) without getting up to walk around. Also, see a doctor if you get any lumps on your legs as they could be blood clots going to your heart (like my dads almost did). One personal word of advice: If you are going to need new health insurance, do not get treated for Factor V for 6 months before you sign up, or they will deny you as a pre-existing condition for every type of independent long term health insurance (Blue Cross Blue Shield, United Healthcare, etc.). However, Blue Cross will cover every other health need under short term care for 6 months.
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lvnwgout
replied on October 29th, 2007
New User
Leiden Factor V
HI Ashley,
My husband suffers from Leiden Factor V as well as his daughter. He learned about it when he was diagnosed with cancer 10 years ago. He had his two children tested and his 20 year old daughter found out that she has the gene mutation also. There is only one really good site that you can go to to find out more about this hereditary disorder and it is http://www.fvleiden.org/
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lvnwgout
replied on October 29th, 2007
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Leiden Factor V
Sorry I accidentally hit enter.
He has had a clot in his lung from the canser surgery and almost died. He is now duffering from Deep Vein Thrombosis or DVT and is on cumadin.
I also want to make sure that you two are aware that you are at more risk of clotting if you take birth control pills. Most doctors know about FVL but are not fully aware of some of the dangers of this mutation. I ask that you both please do alot of research on your own because unless you have a really good doctor they will not do the research for you.
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1timemom2b
replied on February 27th, 2009
New User
I have Factor V
I am 25 years old and found out I have the blood clotting disorder also. I had a DVT two years ago when I broke my ankle but was not tested until I became pregnant. My only advice is if you know you have the gene mutation and become pregnant please let your doctor know immediately. I have to take an injection of lovenox every day and have had a successful pregnancy so far. I have had to do a lot of research myself also but my doctors have been great through the pregnancy and very informative.
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