Opinions Required - APS screening - please read

I have been thinking for some time about this, and I really think it makes sense. But I think all females should be screened for APS before they are put on the contraceptive pill. This condition is more common than we know, and if females are screened at age 16, it could mean less risk of the fatalities from blood clots, or near fatal blood clots (as being on the contraceptive pill and having APS is a recipe for disaster - as it was for me!). And it will also help with pregnancies - as women will know before they start trying for a family if they require aspirin/clexane during their pregnancies.

What's everyone's opinions on this?

And who do I approach to make this point - is it my local MP?? Thank you x

7 Replies

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  • I am in New Zealand and my Dr and Derek's Specialist recommended my daughter get tested at 16, (before she thinks about going on the pill) and gave us a Blood Test sheet with all the relevant tests requested as her father has APS. She had the bloods taken, but they said there was not enough "pickup" so they don't do the tests without previous symptoms, such as clots.

    Basically you have to die before they want to know about it over here.

  • I still think to be tested is best at least it gives a chance

  • Hi Louise, I've replied to you on the Facebook group too but just to reiterate ...

    I totally agree with you and it's something the HSF charity has been campaigning for a long time now. However, we constantly hit the ceiling of NICE not taking any notice because the evidence base isn't big enough on the Cochrane Report library, and good old 'health economics' - apparently it would cost far too much to do this for the amount of women who would test positive.

    Obviously, this is something we disagree with but there's not much we can do until NICE takes notice. However, in the meantime, please do write to your MP - people have done so in the past, and the more people who do, the more they will have to listen.

    The Hughes Syndrome Foundation will support you in this, so good luck and thank you for taking the initiative :)

  • Hi, anything that catches Hughes Syndrome early on like this to avoid serious medical problems and heartache further down the line, plus of course the money saved with prevention in the first place would be a very good idea. NICE like anything else has it's speed of operation and decision making! Good luck with your endeavours, and if you need any support of this forum via the Administrators, please do not hesitate to let us know. MaryF

  • 100% in agreement....as a precaution....I was not diagnosed with APS until I was 62...gratefully before I had a clot or serious crisis....but I remember taking the "Pill" when I was 20 years old.....shortly after I began to feel weakness in my legs; and almost fell down....I made the decision then and there to stop taking the "Pill"....who know what would have happened if I had continued to take this high dose ....much higher than today

  • Hi, I started the "Pill" in 1965 and took it till 1972 wothout any stop. At that time it was very strong . I have told my two daughters not to take the "pill" (they are now married age 37 and 39). My problems started much later.

    Best wishes from Kerstin in Stockholm

  • I had my daughter tested here in the USA before she went on any birthcontrol. Due to me having APS, they had no problem testing for it. So until then, we need to be the voices our family, friends, and loved ones to get tested. Thankfully she did not have APS...but I do wonder, does she need to get checked again later in life?? I was 35 when I was diagnosed, after DVT & PE. And I was not on any Birth Control at that time.

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