Hereditary?

[minnime63]

There is a recent thread on a Facebook support group where members were talking about whether or not their children had been blood-screened for this awful disease. Is this something you have, or would consider having, done? Is it offered, as I suspect, more in the US than the UK? I know there have been murmerings about whether or not offspring and siblings have a propensity, but not sure how strong or tenuous the theory is?

[Lure2]

Hi, I have APS and all the antibodies in high titres. My two girls, aged 38 and 40 wanted to be tested when they know about me having it.

They both tested negative. They made a visit to my Rheumatologist and took all the bloodsamples. I guess I myself was negative when I was 40. I had no symptoms at that age.

Some of us here are always negative but have the symptoms of APS. That is why it is so important to have an APS-Specialist who knows the illness to get a correct diagnose.

It is not an awful illness if you meet the right doctor in time before the illness starts to control your body. The most important thing is to be anticoagulated at a relative high range and to keep steady there to avoid the thromboses. I have not so much pain as many on this site. There can also be Lupus together with APS.

We are all different but we all have an illness with too thick blood that need to be anticoagulated.

Best wishes from Kerstin in Stockholm

[minnime63 in reply to Lure2]

Thanks Kerstin, I have had symptoms for years but wasn't taken seriously until now. I saw a rheumatologist about five years ago who didn't order any bloods, just said it was probably myalgia! Now I've had the diagnosis for a whole week and seeing the haematologist today. Can't wait for some meds to help me feel normal again!

[MaryF Administrator]

Hi, if they show obvious symptoms from an early age, then yes do test, but of course tests are not conclusive, what can be negative can later on be positive. However if they show no signs as children I would wait and see. If you have daughters and they reach the stage of planning for children, at this stage I would test, and also I would not consider the contraceptive pill a good idea for any of my children in view of the wide family history.

MaryF

[minnime63 in reply to MaryF]

Thanks Mary. I have a daughter of 34, along with two sons. I may have a chat with her but keep it upbeat (don't want to alarm her but she should be aware).

[Lure2]

I totally agree with Mary.

Kerstin

[Jillymo]

May i just add, it is wise to avoid HRT as well as the pill. I was taken straight off HRT as soon as my sticky blood was diagnosed. x

[Sal0712]

I have APS and my GP has written into my daughters notes, that she is to be tested around her 14th birthday, as it was at age 14 that I started showing signs. She is only 5 now, but as I wasn't diagnosed till my daughter was 11 months (with life threatening consequences), they don't want to take any chances!

Sally (Sheffield-England)

[dar58]

Personally I think heredity may play some sort of factor. Both parents had been on coumadin for many years. My sister and I both have APS and Lupus along with being positively diagnosed with MS. My daughter recently was told her blood is too thick and is now getting tested, she was diagnosed at age 2 with Juvenile Rheumatoid arthritis. It seems as though auto-immune problems run very high in my family but with the exception of my Dad, it seems to be targeting mostly the females. While living in Florida, I was going to Shands hospital which is a teaching hospital and was diagnosed there with my "conditions". At that time, one of the Doctors there wanted to study my sister and I regarding.... if our many medical problems were hereditary or environmental. We grew up in a textile mill city. I really wanted him to do this testing, my sister on the other hand was extremely apprehensive and flat out told him no, "she wasn't going to be anyones guinea pig". There wasn't any way of changing her mind which is a shame as I really would like to know. Since then other doctors had also mention it may be one of the other, heritary or environmental.

[minnime63 in reply to dar58]

Thanks for that, shame your sister didn't submit to the testing 😏😏

[PepperT]

My rheumatologist recommended that I get both my girls tested. My eldest (23) has suffered severe migraines since 13. My youngest (18) has terrible memory, brain fog and livedo.

[chrissybell]

Just waiting on my daughters test/s - she is 18, has suffered migraines since age 8 and has had CFS/ME since she was 13. Will let you know - back up to St Thom's on Monday 23rd Feb! xx (I have primary APS)

[minnime63 in reply to chrissybell]

Good luck ☺ let us know how it all goes.

[chrissybell]

Yes, Katie has tested positive, so now also being kept under Prof Khamashta! Starting on baby aspirin, will be seen yearly - and when she wants to start a family she'll be closely monitored by the Prof!!! - Poor sweetheart - what a grotty mum for passing on the 'bad bits'!!! Also seeing a neurologist as the headaches have been bad since Jan 1st - but the Prof said aspirin may make a difference - so we'll see.

[minnime63]

Ah, poor thing! At least it's been spotted before something nasty happened ... so good mummy for making sure she was tested! xx