Who has a close relative with APLS?

[tassie]

Just wondering how many of us that have APLS also have a child, sibling or parent with APLS?

I also have FVL and have just found out that one of my sons has inherited FVL. I have asked twice for him to also be tested for APLS but both times, different doctors they somehow missed those tests off the request form.... very frustrating!

[Lure2]

What does FVL mean? Sorry do not know.

Kerstin

[tassie in reply to Lure2]

Hi Kerstin

FVL is Factor V Leidon which is a genetic blood clotting disorder which also causes miscarriages. My children have a 50% chance of inheriting it as I am heterozygous.

Having FVL was the only reason the haemotologist took me seriously as he was very sceptical about the APLS. Its also the only thing that the ER doctors understand so in an absurd way it has been useful in getting coagulation meds.

[Lure2 in reply to tassie]

Yes I have heard of that many times. Many members on here have got FVL.

Thank you for explaining to me.

Kerstin

[MaryF Administrator]

My late father would have had that plus Lupus, also both my sisters, probably my brother although did not show up in tests, and also my two youngest children plus a question mark over my eldest now also. MaryF

[Hidden]

I believe my paternal grandmother had APLS...circumstances surrounding a "sudden" clot(or some such event in her brain) that lead to deterioration....and death....too complicated story....but what I have pieced together leads me to believe she had APLS....

[margbott]

Just a different point of view heŕe from USA

My son likely has any one or several of my genetically based clotting problems. However here in US if he had no tested while young it could have blocked his ability to procure any health insurance when he got older.

I always let his pediatrician know that I had clotting disorder and whenever necessary we proceeded as if he might by hyper coagulation. Of course we would have tested at once in an emergency situation. To

B y The as if ? When he had his wisdom teeth removed we found and oral s surgeon who had experience with hyper coagulation. When he broke an arm on the play ground we added aspirin carefully watching for any problems, clot related and Reyes syndrome.

Maybe insurability will be less problematic now with changs in the law and Obama care. Maybe it is not even an issue in Great Britain. Just something to consider.

Margaret in California

[tassie in reply to margbott]

Margaret yes this is definitely worth considering. I don't think its an issue with health insurance here in Australia but it might be. I can see it might be an issue getting travel insurance as you have to disclose things like that in that situation.

Those in the US and other countries may well need to consider it so thank you for bringing it up.

[Leenalina]

My grandmother (father's side) had lupus and died from stroke, she was 61 years old. All her three siblings had sroke also. Only one of them survived from it.

[GinaD]

My physician father, who had a life long problem with DVTS, always insisted he suffered from " a lupus like disease which is not strictly lupus." I have no doubt, given his list of symptoms, that he had APS. Since he was a doctor, he self-medicated to keep his blood thin and his immune system quiet. And when I got my first DVT, which initially I thought was just a pulled muscle, he arranged for me to see a vascular surgeon friend of his who diagnosed me and put me on warfarin. My Father passed in 1990.

My understanding from what I've read is that one can inherit a tendency to autoimmunity. But which specific autoimmune disease one gets, if one gets one at all, is determined by environmental factors --many of which can not be controlled. I had mono 7 times within 14 years. A relationship between this virus and APS has been suggested. How can you insure someone never brushes up against the mono virus? You can't. It's an environmental factor you can't control.

If you read up on autoimmunity you may find, as I did in " The Autoimmune Connection," that rheumatology divides autoimmunity into certain " families" of disease. And that if a relative of an autoimmune patients also develops a chronic autoimmune issue, it will probably be a disease within that same " family" of diseases. ( APS is in the same grouping as lupus and Sjogrens.). But current thinking emphacises that an inherited tendency to acquire autoimmunity needs some environmental trigger to activate it.

[tassie in reply to GinaD]

This is fascinating Gina. Thank you for telling us about it.