Welcome to FVLeiden.org


Welcome

Thrombophilia is a term which includes a number of genetic conditions which increase the tendency of the blood to clot, leading to sometimes serious and/or life-threatening complications depending on the location of the clot.

This website exists to help persons affected by thrombophilia by serving as a portal to a wide array of diverse and up-to-date information, education, treatment, research, peer support and more.The information on this website should not replace the advice of a health professional.
This site is created and managed by a patient for other patients. I hope by sharing this information, you'll find the information you need to stay healthy and clot free.

FVLeiden Email Forum Discussion Group



Our discussion list is a place for email correspondence regarding thrombophilia issues:

Factor V Leiden and/or clotting related.

Currently there are over 1300 people on our emial forum list from all over the world. We are an international group!

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Newly Diagnosed? Start Here!


Thrombophilia Resources Around the Web

Finding an MD specializing in Thrombophilia care


Pregnancy: Think you can't? Think again!

Severity of complications associated with thrombophilia vary depending upon location and size of the clot. Clots in the extremities can cause superficial thrombophlebitis or deep vein thrombosis (DVT), both painful conditions. Clots in other areas of the body, such as the veins of major organs like the brain, liver and lungs, can be acutely life-threatening, and arterial clots can cause stroke and heart attack. Persons with thrombophilia wishing to have children should be aware of possible complications including stillbirth, and preeclampsia.

Treatments are available to reduce the chance of complications and/or clotting events in persons with thrombophilia, and several tests are available to diagnose various forms of thrombophilia.

As with any chronic medical condition, the key to managing thrombophilia is access to information. This website exists to help persons affected by thrombophilia by serving as a portal to a wide array of diverse and up-to-date information, education, treatment, research, peer support and more.

When I was diagnosed almost 20 years ago there was only one link on the web. I had questions and I didn't know where to go for answers. Now there are many pages of information out there. I'm not a doctor. I just pass along information.

I've had multiple clotting events. I hope by sharing this information, you will not have the medical experiences that I have had. Please pass along any links you think are useful so I can update the site for all of us.




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Coumdain information and side effects from Elaine and James. Two members of our mailing forum
Information on Coumadin
Diagnosing Pulmonary Embolism: A Medical Masquerader
Prothrombin mutation G20210A information from Michael Wosnick
The Genetics of FVL, by Jennifer Rosenberg
An Explanation of Factor V, by Michael Wosnick
Midwifery Conference Handouts
OBTAINING MEDICAL RECORDS FROM AN ACUTE CARE HOSPITAL/ER
Giving LMWH shots - from Tamara on the mailing list
Adult Medical Genetics Program
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