Is APS hereditary?

My sister was recently diagnosed with APS trying to help as much as I can. She keeps encouraging me to be tested. Don't have her symptoms. She has it quite severely. She lost a leg last jan. to the disease as a blood clot came out of nowhere in her foot. Drs tried to bust clot with medication 3 times to no avail. She did not know she had APS then she found out 6 months later. I have an under active thyroid but that's it except for severe irritable bowel syndrome which no medication has helped so far. I guess what I'm saying is I'm afraid to be tested. What I don't know won't hurt me attitude. I know that's not true but so far I haven't been tested.

14 Replies

  • I don't know for sure but I'm sure there will be somebody more clued up than me who replies!

    I'm not diagnosed but I am symptomatic with a first positive test.

    Interestingly I came across a paper about some family tendency. I have told my sister to get tested as she has had unexplained fertility for years and I've also read this can happen as well.

    Good luck and in my humble opinion go for test - it's only a blood test and could prevent any future problems.


  • Thanks I think that's good advice

  • Hi Nanny, My mother, sister and I all have APS, as well as MS and Lupus...which many people believe you cannot have the 3 auto-immune problems, but we do. Some years back, Drs at a teaching hospital wanted to test my sister and I to see if these were hereditary or caused from an environmental exposure as we grew up in a mill city. My sister refused, saying she didn't want to be anyone's guinea pig"..I was dissapointd as I really wanted to know, and my mother had already passed due to bleeding out from the coumadin. As far as APS, I really believe there is some genetic factors there as my DR recently asked if my daughter has been tested yet. She will be tested soon as well as my g'daughters. I believe better to be safe then sorry. Good luck!!

  • I have read in several papers that it "could" be hereditary. Since it was just "found" in the 80's I suppose enough research hasn't been done on it........ I had my son tested when he was younger and he tested positive for a couple antibodies, but then I had him tested again just before highschool, and he was negative for everything! So who knows, I was adopted at birth and would so love to know what any siblings or biological parents had going on!!!!!!!!! Back in the 60's it was hush, learned nothing much about biological families......

    To be on safe side you should be tested. Just so you know I guess. Altho' listen to me.....I'm afraid to have a colonoscopy done because of some changes....I don't want to know either. It's up to you! Good luck!

  • Thanks for your advice. I was deathly afraid of colonoscopy. Had one found 3 polyps sniped the polyps and I'm fine. Go and get it over with. I'm leaning towards getting tested too. Good luck

  • I was diagnosed in december 2012 after an unexplained DVT and multiple PE's. My sister at the time told me she had APS, (I hadn't known she had the condition just that she had experienced many miscarriages) and to ask the medics to test me for it. I was therefore tested and diagnosed very quickly with APS while I was still recovering in hospital and placed on warfarin for life. Since that time we have discussed the family health quite a lot and realised that a great aunt and our mother both had unexplained clots. We spoke to our eldest children, my son and sisters daughter and my son was told he would not be tested unless he had a clot so there was no point in a diagnosis and my niece was told the same thing. My son is very aware of signs and symptoms as is my niece, however my niece is very angry to be told that she would not be diagnosed unless she has a catastrophic medical incident/miscarriage and I think she will take it further as she has a lot of signs already of an auto immune problem. The rest of the children in the family are all younger and will be taught to recognise signs and symptoms as they get older. As for my sisiter she has never had a clot and is not prescribed medication but she continues to take asprin which was suggested when she was trying for a baby and of course had my niece. I guess the jurys out on whether testing for the condition isadvisable when there are no clear indications. My younger sister is not interested in being tested for this reason, but of course we all have to be very aware of the condition and act accordingly.

  • Autoimmune is heredity. Which autoimmune illness you end up with is the question. My dads mom had a thyroid condition which both my sister and I inherited. A female cousin has totally different autoimmune illness. My dad has lupus and I also have APS.

  • Thanks that makes sense.

  • So far there is no proven genetic links however a survey done on one of the HSF Patient Days of the people attending showed that there was a tendency for it to run in their families. There is obviously a need for more tests.

    Prof Hughes always advocates that Hughes/APS runs as a trio with Autoimmune Thyroid and Sjogrens Syndrome (which many people are told is Fibro). Additionally as Celiac Disease is linked to Thyroid Disease, its not unusual to find people also with CD or at least Gluten intolerance and because of that he always tells his patients to give up Gluten.

    Given you already have a known Thyroid problem and stomach issues which are intractable, I would advocate that you be tested for CD. Even if that is negative Id try a GF diet to see if that helps your symptoms as Non Celiac Gluten Intolerance can be just as serious as CD.

    Personally, if I were you I would be tested. Its much better to know and be treated than worry about do I or don't I and worse suddenly have something horrible happen. Being somebody who was not tested and had my diagnosis missed for many years causing a PE and a stroke which almost killed me, I suppose Im bound to say its better to know. Ostrich Syndrome does not make things go away and things are never actually as bad as they seem in reality. Its the not knowing that makes them worse.

  • Thanks so much for the good advice. Made an appointment with my dr. to be tested. Hope he knows what talking about. Not a a lot of Drs. are familiar with APS. Can't hurt to be tested.

  • My hemotologist says it's not hereditary. My daughter has miscarriages and that's a good symptom. Father had a history of blood clots also. Just makes me wonder cause I have APS.

  • Yeah it is my RADIO Doc said I prob got it from my mom. She was never checked but she had markers. I've asked her to get tested along with other family members.

  • I know that many times people with APS have family members with other auto-immune diseases. My father had Multiple Sclerosis and so does my cousin. My sister has Crohn's Disease and my other cousin has an auto immune disease called Meniere's disease. From being on this and other APS sights, I've found many families with strong auto-immune connections. I believe it traces back to my paternal grandmother. She miscarried 3 times back in the 1940's-50's. As far as I know she was never tested for any auto-immune disorders.

  • Hi,

    I think you should be tested and agree with APsnotFab.

    I would do it for my sisters sake. She is worried that you have got it and you have no symptoms. If you get symptoms you should absolutely do it.

    Kerstin in Stockholm

You may also like...