I've not had my testing yet (finish the warfarin in July) but it's definitely something we've talked about depending on if anything is found.
I've got 2 daughters that are 19 & 21 so if there's any increased risk we feel they need to be fully informed, especially as they're on BC pills at the mo.
I also have 3 sisters, one who's had TIAs recently so it will be interesting to see if there are any links between those and my PEs, although I believe TIAs are arterial as opposed to the PEs being venal...
I want to feel informed but don't want to worry my family unnecessarily either....
I'll be interested in reading other peoples replies too xx

If you're talking about testing for clotting issues only------ my opinion would be to have it done. Be aware that finding the gene does not necessarily predict severity and probably doesn't even predict if the person will even have clots in the future.

My thinking is----- at least then you/or the person knows what might happen and if they start to experience some of the symptoms they can ask their doctor to perform the right tests. So many of us here have had our symptoms ignored but perhaps a copy of the genetic test might make a numb-nuts doctor pay attention.

Genetic testing is in our future, like it or not. There are people who make their living by doing genetic counseling. I'm not sure if counseling is particularly needed for clotting issues (just my opinion) but it certainly might be for different diseases.

I've always been a 'forewarned is forearmed' kinda person. Some aren't.

clarkjulleann,

Your children are young and have probably already had mandatory genetic screening performed for a couple of dozen or more genetic problems. One of them is :

"What is homocystinuria?

Homocystinuria is an inherited disorder in which the body is unable to process certain building blocks of proteins (amino acids) properly. There are multiple forms of homocystinuria, which are distinguished by their signs and symptoms and genetic cause. The most common form of homocystinuria is characterized by nearsightedness (myopia), dislocation of the lens at the front of the eye, an increased risk of abnormal blood clotting, [...]"

http://ghr.nlm.nih.gov/condition/homocystinuria

I'm sure you've been given the results so at least you know that homocystinuria isn't a problem for your children.,

For infomaniacs the complete list of genetic test performed on newborns is at
http://ghr.nlm.nih.gov/search/healthTopic/newborn-screening?query=%22newborn+screening%22&show=conditions

And just so people aren't freaked out

"Nearly 90 percent of families who get a positive test result from newborn screening find out that they had a false positive, according to the study." according to this article:

http://www.jewishjournal.com/health/article/pros_cons_of_newborn_genetic_screening_20110503/

Read the entire article---- it has much more positive information than negative.

(That article is from the Jewish Journal. There are absolutely NO racial or ethic overtones to my posting of it!)

My husband has a strong family history of clotting since his father has had DVTs (and is a lifer) and his grandfather died in his 40s from clots. He has an aunt and cousin who are positive for whatever the genetic factor is (can't remember right now) as well that they all have.

But my husband has never been tested and doesn't want to be. He's had numerous foot and knee surgeries and never had an issue. He's also flown internationally a number of times and never had an issue. Even if he does have the genetic factor, it doesn't seem to be causing him any issues.

Mostly he doesn't want to be tested because it could make it difficult to get health insurance or long-term care insurance and might be interpreted as a pre-existing condition. I suppose that doesn't matter as much in Canada with the public health care, but it can be a concern here.

And we don't have kids (and won't) so I can't really look at the question from that perspective, but I probably wouldn't look into it until you're looking at a risky situation (pregnancy, BC, ankle surgery) or similar.

I mean, in most cases, I don't know that it'll give you anything extra to work with. As blood clot survivors, I think most of us are pretty diligent about making sure we're taken care of during hospital stays to avoid clotting (pressure stockings, walking, anticoagulants, etc) and I do the same thing with my husband.

Tons of people get clots who have NO genetic clotting factors. If you have to have surgery, they should treat you like you're going to clot ... cause you might, regardless of what the genes say.

It is dicier with women and BC and pregnancy, though, so it might be worth looking at that.

I don't know if my ramblings helped at all. My husband has never been tested but when his half-sister reached the age where she might be considering taking BC, I told him that she should really be warned about symptoms to look for and etc. I don't know if the genetic testing is warranted, but at least being educated is a step forward.