Debby
Message 1 of 1
I have Scleroderma (CREST) & anticardiolopin & lupus coagulant antibodies, which i believe is Antiphosopholipid Syndrome (Hughes Syndrome). However my family & I are quite concerned about the blood clotting problems within our family. On my fathers side there appears to be many blood clotting problems within the family. My grandfather died from a pulmonary embolism & his brother had to have his leg amputated after a deep vein thrombosis. My fathers sister died from a pulmonary embolism & my father has had strokes & a heart attack. My sister at the age of 23 had a pulmonary embolism & a deep vein thrombosis last year. My niece at the age of 18 had a deep vein thrombosis. My nieces sister wanted to go on the contraception pill recently but because of the blood clots in the family was adviced to have a test to see if she had a faulty gene that caused blood clots, this proved negative. My sister & other niece have also had this test & was negative. From research I am presuming the test was Factor V Leiden Test, although I am not sure. On my mothers side there are quite a few different autoimmune disease, going back to my great grandmother who had pernicous anemia. My mothers sister (aunt) has antiphospholipid syndrome also & her daughter has low platelets. I am curious as to whether there could be a genetic link either from my mother or fathers side. My sister & niece have not had the cardiolipin tests. Could it be possible that they also have APS & would it be normal for it to run in families like this? Would it be worth while asking for my 3 children to be tested for APS or Factor V Lieden? I don't know if I have had the Factor V but I have not had a blood clot to date (touch wood) although I am not on any treatment for thinning my blood. Should I be? Does my family need to ask for a specific test to be done & is anyone more at risk than anyone else?