Young(ish) APS patients?

[disloyalorder]

Hey everyone, I'm new and wondering if anyone on here was diagnosed with APS when they were in their teens or younger? Or if you know anyone who was?

I was diagnosed when I was a teenager after being hospitalised with a PE. This was eight years ago. I guess I was lucky because I didn't really have many symptoms before, but when the PE happened the doctors did the anti-cardiolipin/lupus anticoagulant/AB2GP tests straight away, and I didn't go through years struggling for a diagnosis.

It has been quite an isolating experience though, as I've not had anyone my own age to talk to who's gone through anything similar. I was wondering if people like me were out there?

[Manofmendip]

Hello and welcome to our friendly forum.

You are indeed lucky to have had such enlightened doctors, who did the right tests so quickly.

Where are you from, as this helps us and others to help you, and who is managing your APS?

I'm sure that others will reply to you soon and you will make friends on here.

Best wishes.

Dave

[disloyalorder in reply to Manofmendip]

I am on one of the newer warfarin alternative drugs, so my APS is largely managed by myself. I was diagnosed in Surrey, UK.

[Manofmendip in reply to disloyalorder]

Thank you for your reply and for explaining that you are on one of the newer anticoagulants.

It is always advisable to have an APS experienced consultant managing your overall care, even if you manage your own medication; someone to review your condition on a regular basis. Have a look at this link, which gives a list of such consultants in the UK:

hughes-syndrome.org/self-he...

I used to live in Surrey, in Egham, before I moved to the Bath area in 1976.

I hope you will enjoy our forum and will contribute to discussions.

Dave

[disloyalorder in reply to Manofmendip]

Oh I have always been under the care of various haematologists, I've only been on the newer drugs for the past maybe two years. It was under the advice of my specialist that I should be okay to self-manage now, but I definitely do agree that it's very important to have a named consultant to contact if things go wrong.

[Manofmendip in reply to disloyalorder]

Good to have you on the forum. D

[MaryF Administrator]

My daughter and son have Hughes, but are not on here, but there are a few students on here, hopefully they will see your post. MaryF

[disloyalorder in reply to MaryF]

Thanks Mary - I hope so.

[kateb81]

I was 18 when I was diagnosed after have a DVT in my right leg. They think going on the pill triggered my APS as I had no symptoms prior to that! I was tested for a few conditions before being given the APS diagnosis and a treatment plan of warfarin for life!

Kate xxx

[disloyalorder in reply to kateb81]

I'd had no symptoms before either, although I wasn't on the pill. Did you find being on warfarin affected your social life and things much? Not that I was ever that much of a party animal, but I did struggle going to uni/ going out with friends when you're 18 and most people's idea of a good night out is getting as drunk as possible as quickly as possible and you're there in the corner with your warfarin and glass of coke! Perhaps this says more about my personality than my condition but still!

Have you had more APS symptoms since being diagnosed? I found the warfarin seemed to trigger a lot of low level health problems I hadn't experienced before my diagnosis, like skin problems and headaches. It took me a very long time before anyone would acknowledge warfarin was causing me problems, not just my APS.

Also hi, nice to meet you

[kateb81 in reply to disloyalorder]

It didn't really affect my social life as I didn't really drink before my diagnosis so I just became the designated driver once on warfarin....

I have the typical APS symptoms like headaches and muscle pains but i'm fairly lucky in day to day life.

APS cause me the greatest issues when it came to having children. I had 7 miscarriages (including 1 late loss) and both my miracles were born early and low birth weight because of it.

Kate xxx

[emem_17]

Hi, I was diagnosed with aps when I was 20, I kept having loss of vision in 1 eye which made them test for it. Since the diagnosis I have had 2 TIAs and struggled walking for roughly 6 months because of it. I had to leave my job as a HCA because of it too. Like you I also find being on warfarin can make it difficult to socialise with friends...they're all going out and getting drunk which using much fun when you're the sober one! I now have a 12 week old baby now anyway so my time is pretty occupied Like you I don't know anyone else with the condition and not many people know of the condition so they just think hypercondriac haha! So I totally understand your feeling of isolation.