Factor V Leiden Support Community Group

This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.

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Heart, Blood & Circulation
/ Factor V Leiden Support Support Group

Family members getting tested

Urlacher
Urlacher
I am the first in my family to have a PE from F5L and I pray to god the last. Recently one of my three sisters has tested positive. She is in her mid 40s and her DR told her the usual for her age. The rest of my family is really worried now and is going to be tested but I am still wondering and contiplating whether to test my kids and what would be the right age. My oldest boy is going to be 15 in August, my other boy is going to be 11 in July, and my daughter turns 5 in November. Going back to work and slowly getting back to normal has taken my focus off of some tough decisions that still must be made. Everyday I think about this disorder and think why me but that has sort of been my life story. Something tells me the way my life has gone I should have them tested now. There really has been no activity on this group I believe most people use the PE group but I believe there should be more responses to the F5L group
RetiredNavy02
RetiredNavy02
I agree as a group, it appears most of us are responding on the PE/DVT group side of the house.

Here is some information from my organization regarding the genetics of thrombophilia and family testing:

http://www.stoptheclot.org/natt_publications/fam_test.pdf

http://www.stoptheclot.org/News/article143.htm

I'm homozygous for FVL which meant both of my parents had the genetic predisposition. This also means, since my wife doesn't have any thrombophilia, that both my young children are heterozygous (been tested and confirmed).

Research shows that for the most parts, males normally don't have any clotting episodes until their mid to late 20's (if at all). Girls become more of a concern when contraception becomes a topic (which could be earlier then when their in their 20's). There is no right or wrong answer to whether families members should be tested. Here is some remarks from a friend of mine who is a leading blood clot researcher: http://fvleiden.org/ask/40.html

I was diagnosed back in 1996 up at Harvard Medical School. Since we have found out the reason behind my clots (2 separate clotting episodes) I have been clot free (other then the short period of time I was not on Coumadin where I had several superficial clots (1999-2000). Knowing I have FVL clotting disorder hasn't changed my way of life. I still Mountain Bike and pretty much do everything I did before my blood clots.
deleted_user
deleted_user
My dad recently found out he has this disorder. I was just tested today and the doctor told me my kids should be checked after they turn 20. He said it doesn't set in until after the age of 20.
deleted_user
deleted_user
What I am wondering is if I don't have it could my kids have it. Although I'm thinking I do have it because I had eclampsia with my pregnancy and I've recently learned this condition is a link so it's very important for females to know if they have the condition, I almost died because of the complications. Trust me if they are linked any woman wants to know, there is precautions they can take if its known about the condition!
RetiredNavy02
RetiredNavy02
Kids can be tested before the age of 20. Both of mine were tested at age under the age of 10 but not specifically for Factor V Leiden (history of hemophiia on my wife's side of family).

To answer your question "if I don't have it could my kids have it"; this depends on whether the father has this disorder (or any other clotting disorder). If so, and the father is homozygous, the kids will be heterozygous. If the father is heterozygous, then the kids have a 50/50 chance of interiting it. The following link discuss this more:

http://www.stoptheclot.org/natt_publications/genetics_thrombo.pdf