Sticky Blood-Hughes Syndrome Support
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Is it possible to have APS from being a child and not having it diagnosed?

From being approx 18 months old I suffered from Epilepsy this continued undiagnosed for 11 years growing up I was always ill, from the Age of 18 I started suffering from a lot of cysts, and migraines and joint pain and water infections, this has continued until a couple of months ago when I had a majority bad blood shot eye then the next week after severe pain in my leg was diagnosed with DVT started on timzaparin injections and warfarin, since then a blood test has shown the AP antibody I'm now, after extensive reading up in this I've had it from childhood and all these things have been linked - I'm in the UK and just wondering if there's any advice anyone can give me - I seen another post on here about weight gain I've lost it again but I gained a lot of weight and I eat sensibly, admittedly not as healthy as I could but not that bad either and eat tiny child size portions and can't shift the weight - as APS makes your immune system attack your body, your thyroid helps fight off infection I'm just wondering if this stops the body losing weight or maybe assists in weight gain - I'm so sorry for babbling I'm new to this site and to APS - everything is just so bewildering at the minute - any help and advice would be greatly appreciated :)

3 Replies

Hello bevjane and welcome

Your post poses some interesting questions and I don't have the answers but I'm sure that many on here will post their views.

Where are you from and who is currently managing your APS?

Best wishes.



I'm in Newcastle, and at the minute the local RNI clinic and the haemotologist, I've only seen the haemotologist once and the concern I've got is my blood keeps dropping from a very healthy 3.1 while on timzaparin injections to a rather dodgy 1.6 when just On warfarin - I'm just worried I'm going to have to be on the injections long term which obviously I don't want - though if it keeps me healthy then personally it's a small price to pay


Hi there, welcome by the way, you may have to go on the injections, however the main point here is that you finally have a diagnosis which will help in the short and long term to get you on a more even keel. It is important also to check your thyroid out, so many with Hughes, end up with this, and an under active thryoid and constant water infections is definitely linked in my opinion. We do have a list of APS specialists on our charity website, which may be of interest to you. You will meet lots of people on here with a similar history to yourself. Mary F x


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