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Anyone with Hughes/ Antiphospholipid Syndrome (or other thrombophilia)? I need to moan!

(1 Post)
confuddledDOTcom Wed 07-Nov-12 02:29:16

I was diagnosed with Hughes when I was 24 and had just delivered my little girl alive at 19+6, they decided there was something obviously wrong with me. After my next pregnancy (got pregnant quickly and was pregnant when I heard my diagnosis) I was sent to see the team connected to the maternity hospital who had looked after me during the pregnancy. They went through all the symptoms, seeing what I had and one thing that came out is I've been having TIAs since I was 13! Probably not surprisingly they were linked to my cycle and taking the pill... Obviously in the last 7 years I haven't taken the pill, sort of taking Aspirin (bad thrombophiliac blush) and had no more TIAs.

That's the quick background!

Was talking to Mum the other day and she said "you want to get them to sort out your TIAs"
"Why? I've not had any in years"
"I was listening to/ watching [missed that bit] a programme and they were talking about TIAs, they said it can be a sign of something else"
"Yes Mum, I have Hughes Syndrome"
"But it can be a sign you're at high risk of something else!"
"Yes Mum, I have Hughes Syndrome!"
"But they were saying it can be a sign you're at risk of heart attacks, strokes and pulmonary embolism"
"Yes, that's the Hughes Syndrome, we know"

What more does she want me to do??? Has she not realised yet that I'm a thrombophiliac and that all those are linked to thrombophilia? I mean, it's stupid question because when she took me to hospital for slamming my thumb in the car door she was using it to get them to do something, so she knows but she doesn't seem to know.

She also seems to think I will cure my fibromyalgia by stopping using the crutches... I don't just use them for FMS, I also have long term PGP (mainly SIJ related) and nerve damage in my spine where I fell down the stairs 7 years ago (a lot of stuff happened together, I fell 5 days before my baby was born and the pain masked the contractions even from the hospital) and my right leg isn't served properly.

"But you don't look sick" eh?

I think I need extra spoons when dealing with her sometimes!

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