factor v deficiency

Posted by cuzisaidsoma

Hi! I am really new to Well Sphere. I have a recently diagnosed disease called factor v deficiency.

I have had a lot of trouble finding info out on it since it is a 1 in 1 million frequency. No one seems to research or talk about or even know much about it.

I know what it is... I have read the same 16 lines on all 100 websites. I just still have a 100 questions. My own doctor and my hemotologist don't seem to know much either.

I think I have joint bleeds... how can I tell?

Is it progressive? Does it get worse as I get older?

Why am I not being treated actively for it? "call us if you need us"

When do I need a doctor for bleeding?

Are there times when it is more or less severe? Can I have an "episode"

What is the diff between aquired factor v deficiency and genetic. How do I know which I have?

I doubt I will get answers here, but I hope someone can help! I realize there are only 150 diagnosed cases of it since 1943 but I am sure there are other tech saavy people out there just as puzzled as I am.

Wow 3 days and no response... I knew I was rare!

Now it has been almost 2 weeks... still no answer :-(

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Answers (6)

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Meredy

Have you sat down with your hematologist and asked these questions? If you haven't, you should. If you don't get the answers you need, switch hematologists.

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I was recently diagnosed and I found quite a bit on the web. I have scheduled an appointment soon with a hematologist to answer more questions.

The dr recommended a baby aspirin everyday. Know the early symptoms of a stroke or clots DVT-deep vein thrombosis so as to get help quickly.

As far as I know it is not progressive.

I hope that helps

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cuzisaidsoma

I don't have Leiden... I don't have enough clotting factor. I have NO risk of stroke what so ever. Thanks for trying.

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Jeanine M.

Everyone including Drs assume you have Leiden because it is the most common. There is little info onFactor V. My daughter and I both have it but it has never presented a problem. She recently had a baby and I have had surgeries with no problems bleeding. I am trying to find out if I should take a statin drug or not.

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signup

I don't know how old this thread is, but I have Factor V Leiden as well. It is actually one of the more common blood clotting disorders. Two of my three children have it - inherited from me. I have had quite a few problems with it including a pulmonary embolism and DVT. I am on blood thinners (Coumadin and Lovenox) for life.

It affects everyone differently. However, I'd caution any woman to never take hormones (or birth control pills) as it is known to trigger life-threatening complications (DVT, PE).

I hope you can get some answers soon!

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wbfoley3

I have it and I am on Coumadin for the rest of my life as well (45 while male). They found out I had it after I developed a clot in my lower right leg for no apparent reason. I only take the Lovenox shots when I need to be off the coumadin for a medical or dental procedure.

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NOTICE: The information provided on this site is not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on Wellsphere. If you have a medical emergency, call your doctor or 911 immediately.

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