Sticky Blood-Hughes Syndrome Support
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Is antiphospholipid syndrome hereditary?

I have just get diagnosed to APS after my second test. I wonder do my children need to get testet for aps ?

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Yes, worth while. One of the Admins here has children with this. I will let her answer for you -They are probably still asleep in the Northern Hemisphere ;)

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Prof Hughes recommends testing if they have symptoms. The jury is still out on whether it is hereditary although there is often a thread in families. Be mindful that your children may end up with labels which can affect things like insurance etc even if they are negative. It happened to my daughter. And if they are positive but no symptoms how will you treat it? I have just warned mine to get tested if they have symptoms or want to get pregnant!

That's my take on it. Good luck

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I do now very little, is it a genetic disisease, or is caused of something else?

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I asked my consultant the same thing and he said it can skip a generation

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Hi and welcome to this friendly site for APS!

I see you are in Norway and I am in Stockholm.

First of all you need to have an APS-Specialist for this illness. Exstremely important! Then you have to learn as much as possible about it. If you stay on this site you will learn a lot from our wonderful members. The Admins are exstremely knowledable and helpful. I know as I was for a short time an Admin also and I have been here for several years.

I have all the three antibodies positive in high titres since 2002. You write very little about yourself and your symptoms but I understand that you are worried for your children and yourself.

I am 71 years old and I have two girls who wanted themselves to be tested from my Rheumatologist when I started Warfarin 5 years ago. They are 38 and 41 now.

APS and other rheumatoligal illnesses may go in families. Myself I think I had an uncle and a grandmother but at that time they knew nothing of APS because this illness is quite new. 30 years ago prof Hughes "found" this illness.

I do not know how old you are but if you have girls who may be pregnant any time, I would tell them to do the tests. My girls were negative but all the same we may be sero-negative and that means that one time we test positive and the other time negative, depends perhaps on a lot of things. Important is if they have the same symptoms like you. Some members here have symptoms and test negative. Then is very difficult in some countries to get a diagnose and treatment. We have too thick blood and when the blood is thinned we feel much better and can avoid more clots.

It is always good that we are diagnosed at an early stage when we have had no clots or dvts or PEs etc.

You can read about it in a book "Sticky Blood Explained" by Kay Thackray. It is not the newest book but she has APS herself and tells about the different symptoms and how it is to live with this illness. There are in fact two books but the first one is very good when you do not know what APS is about. Also good for relatives to understand APS!

We do not know if it heriditary but some members have relatives with it or SLE or Sjögrens syndrome also sometimes.

Stay on this site and read also at hughes-syndrome.org/

hughes-syndrome.org/abo...

Best wishes from Kerstin in Stockholm

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Ice job my friend , where have you been ??

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I personally wouldn't test unless they showed symptoms. My daughter is 16 and (fingers crossed), so far so good. Her childhood has been healthier than mine. I believe though because we have an autoimmune disease our children have an increased risk of getting "an autoimmune" disease. Whether they get anything will be heavily influenced by DEAL. Diet, exercise, attitude & lifestyle. The other biggie is stress! I emphasise these things to my daughter & am confident she will be just fine. The autoimmune "seed" will not germinate!

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Hi yes it can be my dad had it and i also have this .My Consultant reckons its definatly can be herederity. I have lupus and APS.

unfortunatly i lost my dad at a very young age and back 35 years ago lupus was not heard of very much he had heart trouble to i lost him at a very young age he was only 38 and at the time i was 14.

It can miss a generation also .

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Hi, I just wonder if you can be sure that your dad died from Lupus and not APS. You are talking of heart-trouble. I also wonder if your Consultant is very good at APS because sometimes Lupus is not Lupus but APS. Just a thought.

Kerstin in Stockholm

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APS is such a crazy strange disease that can present itself so differently in so many people! My son had his first event at 8 months old. His body clots off organs. Then at 26, it destroyed him mitral valve, and at 31, he had a stroke and several mini-strokes ... We are still dealing with heart trouble - atrial fib and he's getting ready to have his 3rd ablation. Keep your chin up!

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Hi, Has he now (diagnosed only 2 years ago) after 35 years of APS (?) an Expert on APS? Is he properly and stable anticoagulated?

i have today Pulmonary Hypertension and 2 leaking heartvalves.

Best wishes to you and to your son from Kerstin in Stockholm

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Thanks, Kerstin. Best wishes to you, too!

Will was finally diagnosed 4 years ago when he went to the ER with his heartbeat 212 beats per min. They got it slowed down and our special blood doctor was called in. Will still has times when he's not therapeutic. That's when he has had his strokes, etc. His heart is still like a football - and he's always so tired. Just now they are getting ready to ultrasound some spots they found on his liver because his enzymes keep rising. The dr is thinking cirrhosis due to all the scarring from the APS. We appreciate your thoughts and prayers. Sure do wish they would find a cure for this!

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Hi there... I have a DNA mutation and Hughes as well, the DNA mutation is inherited so I will get my daughter tested for it at some point and also for the Hughes at the same time. My gran has lupus and we have the same symptoms and pains.

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I have a very good consultant all i know is what they are telling me , My dad had had 7 heart attacks and several blood clots as i said i was very young at the time he died and every gp and consultant i have seen has said that it is heredirity, My nephew has addisons to and was told this also is linked to lupus . Lupus has come along way since the 80s i only wish he was still hear ,

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You also said you have APS and that is why I asked if you have an Expert on APS/Lupus who knows the differences between the two illnesses.

People may have Lupus and afterwards the Doctor says it is APS. If the Doctor do not know the differences or are afraid to admit he was wrong, you can go on having either two illnesses (in fact it is only one) and the wrong diagnose and the wrong treatment. That is one of the reasons why it is so important to have an APS-Specialist. Today when we know of APS there are not so many false diagnoses and in fact it is rather uncommon to have both Lupus and APS. APS and Lupus and Sjögrens syndrome are "cousins".

Kerstin

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Hello Kerstin

I have a APS consultant and a lupus consultant along with others as i am avery complex case ,

All i know that these were all confirmed 15 years ago and previous to that i was undiagnosed for over 8 years as nobody new what was wrong with mw untill i moved to a difrent hospital were i have undergone so many test, and i now have sevral diganoses ,

such as APS , Lupus, Asthma , copd, fibromiaga , hyper tension,dibetic, migraine, Thats just a few and i am on a very long list of meds ,

sorry for mis spelling not my strong point,

Take Care.

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I know they are still doing a lot of research on whether APS is hereditary. I have six grown children, and only my oldest has APS. Neither parents or grandparents have it - however, there are several ancestors who have / have had rheumatoid arthritis and other similar auto-immunes.

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The jury is still out on this and as far as I know there is still no "proven" link, however we know from some of the unofficial little studies that have been done, one at one of the Patient Days, that it seems to run in families.

My own take on this is that if you have any autoimmune disease (or any disease) you have a susceptibility in your family for that disease (or one of its family types of diseases) to emerge, but it will normally take some sort of a trigger be that an emotional, physical or mental trigger. So you could be lucky with that risk all your life and never encounter that trigger, which starts the train in motion and sets off the disease symptoms. This I believe is the same for all diseases not just for ours.

Added to that family members may well present in different ways and have different versions or with autoimmune diseases, have a different type of disease.

So its not clear cut or simple just to give a straight forward answer.

If you have family members that are symptomatic then I would get them tested or tell them to get tested. If not my personal feeling would be if they are young, just watch and wait, if older, give them as much information as possible and hope they will take it on board and be sensible if and when it is ever needed.

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I know that many members on here have family members with other auto immune disorders, my own included. My father & 1rst cousin have Multiple Sclerosis, my sister has Crohn's and my other 1rst cousin has Menieres Disease.

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Hi, I have primary APS (LA positive), my mum has skin Lupus and rheumatoid arthritis (she is not tested for APS). I will check if my son (who is only two now) ever gets symptoms and will get him tested if he does. Depends on the symptoms. I never experienced a clot, but do have a diagnosis (after HELLP pregnancy) without treatment, which can also just be a frustrating thing. So I would only let my son get tested if he gets serious symptoms or if in future there is proof certain preventive measures make a difference.

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Hi Beartje,

I wonder why your mother is not tested for APS? I have read that 5 % are positive to the antibodies but have no symptoms what so ever. They also speak of a "trigger" to start it. I know I had a "blood-accident" that probably started my APS. As I understand it you have no symptoms at all. I was 45-50 when my first symptoms started.

Anyway it may be good to know of the symptoms of APS but forget about it and live a normal life.

Good Luck from Kerstin in Stockholm

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Hi Kerstin, she has discussed this with her specialist following my diagnosis, but decided not to get tested. She did not suffer any clots and on her side of the family there are a lot of people who suffered from bleedings in the brain (not sure what the official word in English is), and she already uses some meds that do not go well with blood thinners. So then you might get a positive diagnosis of the antibodies, but then what? Blood thinners as a precaution with the risk of bleeding? So, yeah. Yes you're right, currently I have no real symptoms. Only occasional dizziness (and the livido on my legs). And indeed, I am getting on with life and just make sure I stay up to date on APS and stay as healthy as possible. :-)

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There is some discussion on this in 2015 patients day videos - might be worth a watch.

No one really knows what the risk of inheritance is, I think it is enough to move APS up the list of differentials in our children, _if_ they have symptoms - but probably no more than that. I think it is important to consider before testing what you would do in the event of a +ve - if nothing, then what is the point? If you are just going to tell then they really need to watch for these symptoms, then why not do that anyway - the antibodies can appear (and disappear) at any time.

Also may want to consider that with a diagnosis there are consequences, they are excluded from the life insurance market (and therefore probably can't get a mortgage) at least in the UK. Doesn't bother me (much) but I already have life cover and a house...

Personally, we have recently had a teenage son tested - previous glandular fever and now chronic fatigue and frequent low level illnesses, GPs have done bloods for a bunch of stuff and we asked for APS as well. But have not screened our other kids.

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My son has APS and has just had his 11 'stroke' (mixture of strokes, TIA, bleeds etc) and when he was eventually diagnosed - after suffering for over 20 years not knowing what was causing them - I asked was it possibly hereditary and could his brothers have the same problems and was told - 'no'.

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Research update last week and posted on the HSF Facebook page:

It looks as though research is finally looking into the possibility that APS could be genetic. From the charity's point of view, we have always said that there is anecdotal evidence that APS runs in some families, but not all - for example, we have mother and daughter as well as father and son media volunteers. Recent research in Italy looking at small family studies suggests that there could be a genetic predisposition to APS, but please don't be alarmed as this does not apply to all families.

ncbi.nlm.nih.gov/pubmed/268...

Best wishes,

Kate

HSF

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Hi I was DX'd with APS in October after loosing my left leg to blood clots spewing from my heart to my leg! I received medical care around Christmastime, the week between X'mas and New Years when doc don't care cuz they have plans! I went too late cuz d

2 idiots told me to wait and have an MRA! I have PV/Polycythemia Vera, nicknamed sludgy blood! I was under the care of hemoifor 13 years and he DX'd me AFTER MY LEG LOSS! I begged my sister to get DX'd cuz I know my mom had it! She had several miscarriages b4 we came and was given shots to keep us inside! I was a DES BABY & already at age 27 had cervical cancer! My sister has thyroid trouble and we just found out she has tested positive for this disease! We are devistated! I believe anyone who has this shud test in families, especially daughters at child bearing ages!!! Better to b safe than sorry! It's very sad that the medical profession has treated me dastardly for 62 years! I had to loose my leg b4 anyone believed me! I knew there was something the doc just weren't getting! I was born sick so I'm use to pain and have an extremely hi tolerance for pain which is bad cuz I stay home till it's real bad and then it's an emergency! Go with what ur body is telling you! Many like my sister are symptom free, but by her being tested, she can now be aware of anything that may come up! My heart bleeds for anyone with this because I know how we r traversed by the medical profession! Sorry this is so long, but need to let people know go with ur gut and ur symptoms and get other family members tested!

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Hi Debb, (call you that)

We need a history like yours to understand this illness in full. It is sad that your mother and you have had these really bad symptoms. I think it is good that your sister has tested and they found only one antibody positive. How many antibodies do you have?

We learn from eachother on this site and you have tought us a lot.

Hope you can hold on to this new APS-Specialist and also your sister if she developes any symptoms later on but that may not at all be the fact. Hope you will have the right drugs in the future.

Best to you from Kerstin

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Hi all -- I come from a family of seven children {to start } i have lost two of my bothers at a young age { not APS related } . so i have two sisters and two brothers still with us . one sister and one brother have been tested AND THEY ARE NEGATIVE .

the other two ,who knows . i am a triple positive with very high numbers {2 of which that go up and down and two always positive } point at hand is nothing showing up in my family yet nor might i add in either of my parents

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Yes, I believe it is. I was Diagnosed 3 years ago, and my youngest daughter was diagnosed at 15 years old, last year. My brother has it, two cousins, and I believe it killed my mom at 56 years old (heart attack and lung pain) she was never diagnosed with APS but did have severe RA. APS likes to piggy back on other autoimmune diseases. I have SLE and my daughter is borderline SLE.

Hope that helps!

Lisa

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