I'm looking for any hints or tips from any young people diagnosed with Hughes.
12 months ago, when i was 20, I had a completely random DVT (knee to belly button) at the time the doctors found I had a large clot and my iliac vein was being crushed by an artery (May-Thurner syndrome, which I now have a stent in.
I had always been a fairly 'well' person up until this point (apart from all the symptoms of Hughes I ignored.)
In the week leading up to the actual clot I had a blinding migraine everyday.
This week, after 3 different & positive Lupus Anticoagulant tests I have finally been diagnosed and am on lifelong warfarin.
I was just wondering if there were any other young people/were diagnosed when young with Hughes?
Did you have a clotting incident before you were diagnosed? Did you notice symptoms before the clot or did you just tick every box afterwards?
I just feel like I need some kind of Hughes community!