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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Urlacher 02/21/2013

On my last visit to the doctor he mentioned its time for my son at 18 to get tested iam really nervous to have him tested just because I don't want him to have to go thru a life of worrying about a potential P.E. anyone have similar. Problem I know iam just freaking out but need some feedback iam sure even if he does test positive he will be fine but it freaks me out to know I handed down something to him.

deleted_user 02/21/2013

I understand the fear. I worry about my 2 children also. They are 22 and 27. The test is very expensive and neither one have the money for it yet. I do not worry quite as much about my son, but I do worry about my daughter and using birth control. Hope your results come back negative! :)

Lemanns67 02/21/2013

This is very pervalent in my family. My dad, and two of my three brothers & myself tested postive for FVL, and have had clots of one form or another. Family menbers that have tested positive, but not had clots, are my son and niece. My third brother has never been tested, and is clot free. None in my family, including myself, have experienced a clot before the age of 40. That seems to be the time to get concerned, at least in my family. Even if your son tests positve, he may never even get one. If he gets tested, at least he'll know if he should be concerned. If testing negative, he'll not even have to think about it.

Randy

Urlacher 02/23/2013

Thanks for the replays. I had my PE at 40. I also have 3 sisters whom 2 out of 3 have been tested and only 1 was positive. She is 48 and hasn't had any issues. My doctor said it could really happen at any time after the age of 18 or so. We all know what those certain things are that could cause a PE, long plane rides, and certain foods, etc.....he said its true for any age but it usually won't happen till you are older. It really freaks me out to know if he is positive but haveing him tested positive or not is the smart thing to do. I have heard story's about not doing it for life insurance reasons. I don't agree with that I want to know, if there not going to insure him or anybody with this disorder than oh well. By knowing you can do the right things to prevent a fatal thing from happening. Living life not knowing because of an insurance policy just don't make sense. My doctor said it is relatively inexpensive to be tested for FVL compared to other blood tests for other disorders. I guess I have to make the appointment for him and deal with whatever the results are and prepare either way. I have been thru some really crazy and horrifying events with my health and I guess I just don't want to see my kids have to deal with that.

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