Sticky Blood-Hughes Syndrome Support

Under 40 and have had DVT, PE, 6 x TIAs and 1 Stroke

As Kate requested I am happy to share my story.

When I was in my mid-20s and on Marvelon contraceptive pill, I flew home from Barcelona and developed a dreadful flu.

Over the next few days my breathing got painful and I was admitted to hospital with DVT which had moved to become a P.E.

After 2 weeks I was back at work on warfarin. In hindsight I probably got a bit of post traumatic stress, due to my 'kick on' attitude!

After a few months I was diagnosed with antiphospholipid syndrome, and although it was never properly explained to me - I knew it could cause problems in pregnancy and possibly arthritis.

However, my consultant decided I was too young to stay on warfarin and I therefore came off it after 6 months.

The next 6 years were a mixture of good and bad health - mainly with me suffering from visual migraines and tension headaches.

Only once did APS raise its head again - when I was wrongly diagnosed with kidney stones..when in fact I had a clot in my kidney. However, haemotology reviewed me once a year and life went on as normal.

Fast forward another 3 years and I started to get tunnel vision out of my left eye, double vision at least 5 times a day and pain down the left side of my face. 3 weeks after this started I collapsed in my boss's office - came to - was violently sick and sent to hospital.

On arrival I was told I had a migraine and was about to be discharged when I casually mentioned that I had APS. A week in hospital and a disputed MRI scan and I was sent home and told to take aspirin and that it was migraine.

For the next 11 month's life was hell - random collapsing, daily double vision and facial pain - with frustration, anxiety and tiredness mixed in for good measure. I continued to attend neurology clinics, GP sessions and haemotology clinics - but no one had the answer.

Then exactly one year on to my hospital stay I collapsed at home after cutting the lawn - no great panic as this had been happening every month or so. But this time I couldn't drink or swallow! It took my partner a few minutes to think this was odd and called my neighbour who was a cranio-physio. When she came over she called an ambulance - and even though I couldn't talk and the right side of my body was paralysed, I was very much aware of what was happening. Although frightening, once I had the MRI scan and was told that I had had a large blood clot in my left side of brain as well as 6 x TIAs (mini-strokes) since my last scan 12 months ago.

So that's my story - now 15 months on, I will be on warfarin for life and I have steadily improved and can talk, walk and do most things and am back at work. I have even discovered 11 years on that APS syndrome is also called sticky blood or Hughes Syndrome! I have to say that finding the Hughes website taught me more in 10 minutes than medical staff had told me in 10 years - so for that I am very grateful.

Although frustratingly the clots could have been prevented if I had been on warfarin - I try to think that at least I am still alive and a lot luckier than other people who have suffered strokes, and haven't made 85% recovery and I do hope to continue to make further recovery ref: brain activity and hope my kidneys remain stable. (Hopefully in 12 months time my spelling and grammar will have improved !)

2 Replies

Thanks for blogging - yet another amazing story - it's so frightening to think that even though you'd had a PE and then were diagnosed, you were still not given warfarin!


It would be fantastic if there was a blood test that could identify if your blood was currently clotting - I thought this was what I got once a year - but found out later they were only checking whether I still had the anti-body!Maybe one day....

Now I get monthly INR checks.


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