I have a stroke in Feb 2007, the spec realized have Huges or APS disease. My kids our 15, 20, 23. When should they get tested?

Also what test should they have see, to see they have disease that have? Another question i had gran mal seizere in 2010, could it be because my APS or my scar tisue from my stroke? thanks for listening to my question. I live in Alberta Canada.

7 Replies

  • Hi there, well done on getting your diagnosis, first of all some people do also have Epilepsy as well as Hughes Syndrome APS and at times it takes some finer detail to work out which is which, however with the right support you should get to the bottom of things.

    Regarding children it does not necessarily mean your children will have Hughes/APS although in some families such as my own there appears to be some sort of close inherited pattern going on. However if my children had not shown very clear clinical signs I would probably not have had them tested until they were in their twenties. My nephew asked me the other day if he was at risk and my reply was, you appear to have had no signs whatsoever, so I should just bear it in mind but not worry about it unless for some reason something unusual crops up.

    Regarding scar tissue, the best person to answer this question I think is APsnotFab, who has been through similar, however I have not had a stroke or any such damage so can't personally answer from my own experience. This article may be a useful read: strokesafe.org/resources/st...

    MaryF x

  • Thanks for response to my questions!!

  • I agree with Mary, they should be tested if they develop any symptoms that could be due to APS and certainly if you have any daughters they should be tested prior to attempting pregnancy and prior to using hormonal birth control. Personally, I would get your older kids tested even if they don't have symptoms because you don't want them to share your fate of having a stroke which could happen without warning symptoms. APS is clearly hereditary in my family. My brother and I both have it, it clearly came from my father's side of the family. One of my sons, currently age 12, developed frequent headaches and severe dizzy spells at age 9. His symptoms improved markedly with aspirin 81 mg daily and he has been taking it ever since. He has so far been tested twice, both times negative. Doesn't matter, I know he has it. I will get him tested again sometime much later. My other son has never had any symptoms.

  • Yes, an old stroke can cause a seizure focus.

  • thanks for the input.

  • Hi there

    I would go gently on testing your children. I would only do it, as has been said, if there are really strong symptoms. No one would treat preventatively without them. Even having the test can affect their insurance record, as happened to my daughter. I discussed it with Professor Hughes, and he said it is not yet proven to be hereditary, although it appears to run in families. Too new a disease. That is why insurance companies are suspicious. And the tests are still not refined enough to be sure. It affected the mortgage she could have when buyng a house, and the protection plan. I don't know what it is like in Canada for insurance, but good luck with it!

  • My understanding is that the tendency to acquire an autoimmune disease may be genetic, though that mechanism is poorly understood. In addition there must be an environmental trigger, but that too poorly understood.

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