Hi everyone, I hope you are having the best day you can!
I have APS, being Lupus Anticoagulant Positive.
As some of you will remember, the day we moved back home on the 3/6/23 (after the post-fire refurb) my husband had a stroke. Luckily not a serious stroke. He was hospitalised and off work a while though and although back at work, remains very fatigued.
Anyway a little while ago, he received a letter asking for repeat blood tests as due to him being only 58 when he had the stroke, they had tested for APS and the Lupus Anticoagulant was positive. He has now been diagnosed with APS himself. (He is taking anticoagulants anyway following the stroke) Nothing else has been said or done.
After speaking to our GP it was decided to test our son for the three antibodies. Long story short, he has been also diagnosed as having APS and is Lupus Anticoagulant Positive also. He is awaiting an appointment with the same Rheumatologist as I see.
I thought APS was a rare condition. What are the chances of all three of us (we only have one child) having it? I understand that one can be predisposed to developing an autoimmune condition if a parent has it. I can't believe that we are all positive to the same antibody?
I wonder if you have relations with APS or have any thoughts on this?
Thanks for reading this. Love Woo 💋 x
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WendyWoo50
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Hi, I have APS lupus anticoagulant. They rerun the test 12weeks later and it was still positive. I have had 3 episodes of blood clots in the lungs 1997/2009/2021 and a stroke. They said I had antithrombin deficiency 3 in 2009. But in 2021 after reclotting on blood thinners it was found I also had APS. We have a very strong family history of thrombus. In 2003 my mum was told she had AT3 and APS.
When I asked my haematologist about it being heredity he said no APS isn't passed down? Strange when the antithrombin deficiency is.
Good morning, I am sorry to hear of your troubles. I am not sure if all the ins and outs but I was diagnosed with APS after having a clot and testing positive for Lupus Anticoagulant. Once reaching adulthood my daughter was tested and has tested positive for one of the other antibodies Anticardiolipin. They have not taken any action regarding it thus far and said they wouldn’t unless she has an event. I know autoimmune conditions can run in families and my mother has MS and my other daughter has various problems that are autoimmune related but on the gynaecological side. It’s all a big maze to navigate through as health professionals that I have seen are all very vague. I hope you find a definitive answer.
I have heard it can run in families. As both of you have got APS it may be easier for your son to get it perhaps. These are difficult questions indeed.
Autoimmun illnesses often go hand in hand and as they all are rare illnesses few Doctors work with the problem. At least now your son has a mother who knows this illness and knows better how to help him. How old is your son? Are you negative to the two other antibodies?
I am very sorry for this happening to you all three. As always a Specialist is important but I know you know that so well.
Thank you. My son is 31. He is finding it hard to deal with as he is convinced he will develop Lupus and be as ill as me. He gets very tired and rests on his bed when he finishes work (he runs a small farm) and usually has an hours sleep.
I have APS. Mt Father had lupus. I was warned at a young age that a trndency to acquire autoimmune disease runs in families. My current understanding is that there are indeed defective genes that when exposed to a trigger ( such as an unknown food sensitivity) that defective gene can activate and --voila --autoimmunity raises its troublesome head.
I was told my APS was set off with the hepatitis B vaccine. That this is common ????
I no longer take vaccines. I also have a genetic bleeding disorder. My daughter tested positive as a preteen. Through working with a naturalpathic and very healthy diet. No longer tests positive. Hemophilia B. Our bodies are incredible. I have been healing my muscular dystrophy with nutrition. Always hope:).
I am healing my adopted kids with the keto diet. Schizophrenia and anxiety. Decreasing meds and doing great. I do a lot of research
Wow you have your hands full. Well done for all that research. My son has colitis too. And intolerances to oranges and melons but he thinks he has grown out of the others (lactose, apples and pears).
I’m weary of innoculations too. I had the covid booster and it caused an issue with my Long QT Syndrome (genetic heart condition).
It’s a mine field isn’t it. My husband has to have the hep B injections for his job. That’s interesting. 💋 x
Pretty sure I've read that APS is thought to run in families but I don't think this is "proven" yet. Other autoimmunes do also.
I have family history of stroke on fathers side (grandmother and uncle) but they were older when they had strokes (I was 45) and were not (far as I know) tested for APS.
Some GPs definitely seem to be aware of possible link - one of my sons was tested for APS when suffering chronic fatigue (APS -ve but had had glandular fever). This was done because of combination of his symptoms and my history. Also, although I think Prof Hughes always said APS and Hypothyroid go together, I am pretty sure I've got that one from my mother not my father (no history on his side), as she has had major problems with it.
After stroke (officially TIA in my case, although some doctors dispute that) fatigue hit me very hard for several weeks maybe four months or so , it passed, sort of, but I was on anti-platelets. After APS diagnosis finalised I was switched to anti-coagulants (warfarin) and fatigue kicked back in with a vengeance, I am sure it's warfarin, never felt good on it but no way to come off it now. Ten years on fatigue may on the surface be "gone" but in fact I think I have learned to manage it (spoons) and adapted to it, aka. "new normal". I no longer work.
Now, on the "what are the chances", my thoughts are that blood-family links are not at all surprising, not just genetics but that families usually grow up in same/similar environment and have immune system exposed to similar things, so if there is any environmental link then families would have that in common too.
It's the (purely anecdotal) possibility of non-blood links that weirds me out. Not just you and your husband - I now have a sister-in-law with Lupus (and maybe obstetric APS), a brother-in-law with autoimmune Hypothyroid, and a cousin (on my father's side) whose wife had CAPS. Chances of that?
I have the single APS version (not Lupus and not triple) but I'm 99.7% sure my mom has it too as she is 80 and has had 4 miscarriages and 3 DVTs all with no explanation.
When I was diagnosed with triple positive APS my family history was questioned in depth. On my father’s side of the family I was able to give a history going back to the early 1700’s. The fact that my father’s family emigrated from Scotland and settled in Quebec was significant because of the high number of cases diagnosed in that area of Canada. My father passed away at age 49 from a sudden massive coronary. He was a very healthy man. His father also passed away at young age. So the thought is that they probably both had APS.
I was diagnosed after having three full strokes and dozens of TIA’s. It was suggested that my four other siblings be tested as well. Only one did and he was fine.
My four children should also be tested, but so far only their INR levels have been checked because they are asymptomatic. I am hoping that in the future they will be able to have a full screening.
This is an interesting look at how genetics are coming along.
Yes, a strong link in my family is evident. My mother, probably 2 of her sisters, ( both dead before I was born) , my son with some antibodies, and daughter with lupus. Both of my sisters have antibodies, and other autoimmune conditions as well. ( one died in 2019 possibly of stroke or aneurysm. )
To add to the multitude of theories, my consultant suggests that if a parent has an autoimmune condition then there is on average around a 1 in 20 chance (5%) that a child will inherit the gene that triggers the autoimmune reaction, but that does not necessarily mean they’ll inherit the same conditions.
I read similar online that although not 100% guaranteed to pass on, it’s also not a 0% chance that it won’t, if that makes sense. It also seems that different genes have different trigger chances so it’s certainly not a black and white matter.
For example, my mother has Scleroderma, Sjogerns and Raynaud’s, my sister has Raynaud’s and I have APS. (My sister and I both still waiting to see if anything else comes along.)
I strongly suspect my younger daughter might have APS, I’m still trying to work out how I can get her tested on the NHS, I have a meeting with my consultant next week and will be lobbying her for some support.
I hope u get the support you need. My so. Was tested on NhS once my husband was diagnosed with APS too.
Reading these replies, and looking into our family history I believe that there’s more than a 5% chance of developing an autoimmune if a parent has one.
We found something interesting when researching our family tree. My dad’s great uncle joined the army. After basic training he was discharged with Rheumatism. That’s what they used to call the aches and pains that we often associate with most autoimmunes now.
So the question is - did he have an autoimmune too?
thank you everyone for your replies. It’s all very interesting and soon we will have answers. I definitely know that there is a strong link in our family. Sadly the next generation are now starting symptoms. I pray for advances soon, before the start affecting our grandchildren too.
Just my rambling and probably not helpful, but it is stunning to see so many with genetics apparently at play. When I was diagnosed, the hematologist told me APS could be inherited or it could be acquired. I never questioned that information.
Heamatoligist began saying it wasn't familial but after saying uncle, mum, sister and now potentially neice have APS they said that there are beginning to consider it could be. So not surprised so many on here have stated others in their family have APS. So sorry that you've all been diagnosed and trust you'll be a great support for each other as the days go by x
Sound like you are really going through it. I am so sorry for all of you. I was told by a doctor that the obgyn’s are testing here but not mentioning it too much. I would gather that the testing information would alert them to a high risk pregnancy which they could monitor more closely to ensure health for mom and baby. And I was told they think it does run in families, they think.
There is another group. in my state that does so much They formed a foundation Hired a doctor social worker etc and really work with the youth promoting activities for everyone - patients patients families etc etc I think it helps to see you are not alone —they even have respite outings for those who care for us Can you imagine ? That we might be difficult to live with ? ?
I have been told APS isn’t hereditary but my grandmother had the symptoms from as early as 1912. My sister has APS and I have APS. Clearly some of us inherented s omething.
Hi Wendy, I agree that there is some inherited aspects to APS. I know of a doctor with it whose parent had it. I had a bad period of hemolytic anemia associated with my APS and after investigating my father's old medical records discovered that he had had the same.
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