Genetics...: I was diagnosed with APS... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Genetics...

lisakay profile image
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I was diagnosed with APS 4 years ago after a DVT & PE. (I was 35) I have a 19 year old daughter that I wanted to be tested for any blood disorder before being put on birth control. Thank goodness I did!! Her tests came back that she has Protein S Deficiency and Antithrombin III Deficiency. But not APS. They did retest while we were there and we go back in 4 days for those results. Can always hope the first tests were false-positives. Just curious if anyone has any experience with this. The genetics of this is mind-blowing.

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lisakay profile image
lisakay
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For me it's like casting a fishing net and gradually pulling in all the info regarding auto immune disease in my family. Apart from my (maternal) uncle, all the auto immune appears to runs on the maternal female line and includes my grandmother, mother, two aunts, sister, first cousin once removed and of course, me. I don't have any daughters but I do have a niece and when I first received my post-DVT APS diagnosis they reluctantly agreed to test my sister but that came back as negative. That said we now know about the positive/negative swing in trst results so who knows. It's a massive jigsaw with everyone bringing a piece to the puzzle!

swx3 profile image
swx3

I have a 22 year old daughter, ( who has just been diagnosed as epileptic ) and whilst I have fought for years to get a referral, I have worries for my daughter, I have been seeing a consultant since November now, and have expressed my fears to him, he has said that once we have confirmation of myself, he will look into my daughter.

My daughter and her partner have no plans to start a family any time soon, but I want to be prepared, I had a successful, normal pregnancy with her, but she was born unwell, and now we had the epilepsy dx. I spent a lot of her childhood unwell, and do not want her to go through what I have and still do, she is aware that I have said to my Doc about it, and that I want her tested.

The word I used with him when talking about her was genetics, so your post really caught my eye! Let's keep in each in the loop. Sarahx

yes.....convinced my paternal grandmother had APS....interesting fact...read that women (no men) have the greatest number of genetic material from their paternal grandmother....related to the X and Y chromosomes and how the X's come down thru the father....my brain has difficulty understanding unless I do a graph...

Leenalina profile image
Leenalina

Luisa, mine too. My paternal grandmother had lupus and died of stroke when she was 61 years old. All her three siblings had stroke also and two of them died because of that.

emmaj profile image
emmaj

Our family genetics is an interested although devastating read-one that I hope to have broken the chain of through my perseverance and diagnosis for the benfit of my children. My grandmother,her sister,and my mother were all dead by 50 due to a rare early onset form of dementia called Picks. Myself and siblings were all born small and early,and my mother had the livedo as I have. I was adopted out at an early age but luckily I got back in touch, after strokes/tests/miscarriages and one hell of a fight I was diagnosed with APS and vitamin d deficiencies, expecting to be dead by 50 and the fear of that for my children I have now been told that the 'dementia' was more than likely a result of APS being left untreated-the only question i have remains,why where they all affetced in the frontal lobe,where as i was affected in the parietal and occipital lobe,however i remain optimistic,and I will have my children tested at the earliest opportunity-my daughter already complain of aches/pains and has the skin colouring I do at 7 x

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