QUESTION

[Pepper81297]

I was 48 years old by the time I got tested for Factor V and for APS, I had my daughter tested when she was 19 and it showed up that she does not have either one does it actually show up on blood test before it affects you? It's just confusing to me because my whole life I never had a problem until I got older so would they definitely be able to tell if my daughter has it at a young age?

[Julie_T]

Only know the answer to the Leiden question......it is a genetic condition and when I was diagnosed I was given a letter to give to relatives that requested a blood test from their GP. If your daughter’s test was negative I think it is safe to say she hasn’t inherited the disease.

Hope this helps

Julie

[HollyHeski Administrator]

HI, and my answer to the APS, was that I acquired it, didn't catch it or wasn't inherited. From checking my blood results I did not have APS aged 18, but came back positive after my first son was born (Stillbirth), but this was in the late 80's when diagnoses of the disease was very new. I wasn't officially diagnosed until my early 40s, 7 years after my first stroke!!

There is some belief now that APS can be inherited, both my children have been tested and gladly come back negative, but I know some people have seronegative APS, which means blood tests are negative but they have symptoms.

Regarding your daughter with APS, keep a close eye out for symptoms and if she is thinking of starting a family, try and get her tested again, making sure she mentions her family health history. (Which is what I am doing with my daughter).

[MaryF Administrator]

Hi, my daughter and two sons have Hughes Syndrome/APS like myself, but in a lot of families this is not the case. However for years we all tested negative, which is not the case now. Keep an eye on your daughter, especially if she is thinking of becoming pregnant, and also the contraceptive pill is a no no. Blood test results can come and go. Please don't worry, it may be she has not inherited any of it. MaryF

[Lure2]

Hi Pepper,

I was diagnosed with APS because of TIAs when I was around 50 years old. I have primary APS as far as we know today.

I have two girls and they have tested neg so far (both over 40) but this is a tricky i llness. You can have symptoms before you have the antibodies in your blood for APS. You can also have the antibodies and just start with symtoms and I also know some have the antibodies but feel fine. Others feel horrible with symptoms of APS and have no antibodies.

Follow the advice from Holly and Mary who knows this illness well.

I wrote an answer to you but I guess you missed it on another persons question yesterday;

Try to keep the INR in place all the time if you are on Warfarin. That can be very important and you may feel much better also. I need an INR of 4.0 to be where the Specialists want me to be. Can be difficult with Lupus Anticoagulant positive I know.

[Pepper81297 in reply to Lure2]

Thank you for your responses to my question. I appreciate your wisdom. My daughter is special needs and probably will not be having babies. I will be sure to watch out for symptoms of APS. As she gets older. At least I know she does not have Factor V Leiden. Hopefully she won't have Lupus either...Again, thank you all ❤❤❤

[Gmagolf in reply to Pepper81297]

What is factor V?

[Ozchick]

My daughter (33yo) has also tested -ve. but I didn't find out until my early 60's when I had bilateral PE's. I've looked back and had so many different symptoms that no-one had put 2+2 together and come up with 4. I feel that I'm relatively lucky in that my treatment is working for me and I've been well for a few years now. I can accept the odd brain fog now and decide it will pass rather than "I must be getting Alzeimers" or some other weird disease!

[Gmagolf in reply to Ozchick]

I like that it’s brain fog rather than Alzheimer’s. It happens to me on occasion and it’s scary

[GinaD]

One can inherit a genetic tendancy to acquire autoimmunity in a given autoimmune "family." In our case, our "family" is Sjogrens, lupus and APS. But there must then be a trigger -- an exposure to something which our autoimmune system mis-idetifies as an "enemy." Exactly what our triggers are have not been completely documented, but there is certainly connections between pregnancy and mononuclesos (forgot the UK name, which is different.), and gluten sensitivity. So, to summarize -- yes she may have inherited an autoimmune gene defect, but unless/until she ie exposed to a trigger/s that gene defect may never be expressed.

Hope this helps. Yes, its confusing.

[KellyInTexas Administrator in reply to GinaD]

“Glandular fever“ in UK...

[Gmagolf in reply to GinaD]

Interesting bi had mono as a teen. My granddaughter has celiac, sister Sjogren’s and dad had RA. Plus both my sister and I had parathyroid disease.

[Kerlampert in reply to GinaD]

Aloha from Hawaii!

I agree with this assessment. We have these potential disorders, if we have the gene. Then when exposed to immune system challenges....eg "moni", etc....we trigger the response. Then subsequent "flairs" manifest themselves in all sorts of ways. I think, in my case, it was several bouts of poison ivy, which ravaged my body when I was a little girl. Then at my first pregnancy, I had a major reaction, resulting in stillbirth.

Our immune systems are complex, indeed.

Kerstin

[GinaD in reply to Kerlampert]

I joke that I could get poison ivy just by looking at a picture of it! And my Aunt once nearly died from PI reaction that went internal. Since going gluten free my PI reactions subsided, and since going on CC detox diet I have even twice pulled PI with bare hands and stumbled into a patch after jumping off an unstable rock - followed up with hand and leg washing -but never got a rash! Amazing!

[GinaD]

Yeah. Mom had undiagnised Celiac, Dad had lupus. And I was diagnosed with 7cases of " mono" within 14 years, In hind sight, most docs think it was a lupus fair.