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Hughes Syndrome APS Forum

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Is this hereditary

Nanny23 profile image
8 Replies

Hi I'm Nanny23 my sister was recently diagnosed withAPS! Shud I also be tested!

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Nanny23 profile image
Nanny23
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8 Replies
MaryF profile image
MaryFAdministrator

Hi it does seem to run in some families but on in every family, it certainly has in my family. Best to get tested to rule it out. The blood tests are simple and inexpensive for your GP to do: hughes-syndrome.org/about-h...

If you get a positive result on any of them, we do have a list of medical professionals on our charity website, easy for your GP to make a referral.

MaryF

Nanny23 profile image
Nanny23 in reply to MaryF

Thanks so much

london-lass profile image
london-lass in reply to Nanny23

Prof Hughes recommends testing if you have symptoms, otherwise leave well alone. Even with a negative result you may have insurance problems like my daughter did. Just because she was tested. Also, if you do not have symptoms it is unlikely you would get any treatment. Good luck with it all. It is not proven to be hereditary although as Mary says it seems to run in families

Christopher_O profile image
Christopher_O

To the best of my knowledge there is a possible genetic link, if there is a family history of strokes. Also, because APS can adversely effect pregnancies, I told my sister to get checked. Perfectly healthy, now my niece is almost 5 years old. :)

GinaD profile image
GinaD

My understanding is that one does not inherit a specific autoimmune disease. Rather one inherits a tendency to autoimmunity. In our current understanding, ultimately it is an environmental trigger that sets off an autoimmune problem. In the case of APS, One possible trigger is a case of mononucleosis, a.k.a. glandular fever. when I was diagnosed I had my two children tested. One was negative, one was positive. So the positive child was told to watch out for symptoms and if she started getting migraines, strange pains or DVTS, she should get more blood testing and consult with a doctor who knows about APS.

Nanny23 profile image
Nanny23 in reply to GinaD

Very interesting. Thankyou

Holley profile image
Holley

Nanny23,

Often when there is a family member with APS, there are family members with other autoimmune disorders. My father and 1rst cousin have Multiple Sclerosis and my sister has Crohn's Disease. We believe my paternal grandmother is the link to the autoimmune diseases. She had 4 miscarriages which is often when women get tested or discover they have APS. I'd definitely let your doctor know.

Nanny23 profile image
Nanny23

Thanks so much

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