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.
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
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
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.
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