Professor Graham Hughes' April Blog 2014

April 2014

“The serious facts about funny turns”.

So ran the headline in one of this week’s free newspapers – the Metro. In many ways it highlights some of the problems faced by Hughes syndrome patients – April’s ‘patient of the month’, for example.

This year our efforts at improving awareness of Hughes syndrome amongst the public and the medical profession have received a huge boost by the return of Lynn Faulds-Wood. Lynn is a dedicated and expert campaigner, as those of you who have followed her TV programmes such as ‘Watchdog’ will know. Lynn helped us enormously in the setting up of lupus charities and awareness back in the 1980s and has since tirelessly worked for bowel cancer patients.

She has now returned to help us try to increase knowledge, not only by targeting the media, but also in the corridors of power. One of her first roles has been to plan an international ‘sticky blood’ week early in July and is already receiving help from colleagues around the world. I hope to tell you more at the Hughes Syndrome Foundation Patients’ Day on May 14th.

Patient of the month

Mrs L. aged 61, had started to complain of ‘funny turns’. These had started approximately one year ago. She had been walking the dog in the park when she felt light-headed and had to sit down for a few minutes. There were no other symptoms.

Over the next few months, she suffered a half dozen similar episodes. Then, she started to complain of sudden, sharp pains in the head – lasting only a second or two.

She was referred for a neurological opinion. A brain scan was normal. Blood pressure normal. Heart normal. However, the neurologist felt that there was a strong suspicion of TIAs – ‘mini-strokes’. While these tests were going on, her daughter, a nurse, had come across the Hughes Syndrome Foundation website. All three tests for Hughes syndrome (aCL, LA and antiBeta2) were positive. She was thought to be allergic to aspirin so was started on daily Plavix (clopidogrel).

No more ‘funny turns’. No more sharp head pains.

What is this patient teaching us?

From the first description of the antiphospholipid syndrome in 1983, TIAs and strokes have been an important feature of the illness, indeed a study from Rome some years ago found that 1 in 5 of all strokes in the under 45 year olds was associated with Hughes syndrome (‘sticky blood’).

“The serious facts about funny turns” article in the newspaper came following an initiative from the UK Stroke Association.

Some figures: more than 1 in12 patients with TIAs will go on to have a stroke. Some 46,000 people in Britain have a first TIA each year. 10,000 recurrent strokes could be prevented each year if TIAs are treated in time. A third of the people who had experienced a TIA believed it was just a ‘funny turn’.

And finally, a third of strokes occur in people under 65.

Just imagine, even if 1 in 5 of young strokes have positive antiphospholipid antibodies, a simple blood test could prevent thousands of strokes – as well as millions of dollars/pounds and untold misery.

10 Replies

  • Thank you for this Mary. Resonates with me xx

  • I wish someone with a white coat had listened to me when I told them I was having "funny turns", perhaps then my Stroke would not be one of the above statistics!

  • Yes a familiar story! MaryFx

  • I have experienced almost the same.

    The Sharp pain in the head that professor Hughes is talking of I also had. Miniclots. I have all the antibodies like the lady he is talking of. I am allmost sure there are different sorts of APS. Not a fact yet!!

  • I hope you are feeling much better now! MaryFx

  • I am on warfarin so I am "safe"

    I am worried though about my diastolic dysfunction in the left chamber due to pulmonell hypertension and walve insufficiency Thank you Mary.

    Good luck with Patients Day on wednesday!!


  • WE talk about Funny turns- I know them feelings all to well- I now have been having pains in my heart that hurt so bad they are parallelizing. it felt like I was stabbed in the heart, it probably lasted 3 minutes but it felt like a 1/2 hour !! I was sure I was going to die , this was at 3:30 in the morning and my little Casey came right up on my cheat -- { HE KNEW SOMETHING WAS WRONG }.It was scary- and those who follow my problems know that right now I am having real trouble all around -I am a triple also such as Kerstin{ MY BUDDY } I am getting worse on all fronts. 2 MRI's in last few weeks and on hell of a ultra sound for positive clotting having to many flares in back , head , whole upper torso-- tomorrow off to Sleep dis-order Doc. as I am suppose to be on my CPAP machine all Doc's want me on to boost oxygen levels in my blood. but I can't use it - to much pain in my neck and then I won't sleep for three days because of to much pain . I have severe obstructive sleep machine is set at 13 lbs. I will tell Doc's on heart issues on Tuesday at talk on INR -- Saturday lots of vials of blood, Rheumy retesting all blood- we know something is real wrong . trying to keep positive - but I think I am losing this battle for right now. will try to keep up with all of you in my situations. Casey sends his LOVE to all ----He keeps me sane--:-) :-) :-) me

  • I hope they help you further, let me know if you need any specific materials to print out or take along etc. MaryF

  • Hi Jet, If I could come over to you and help you but I can only be here and THINK of you and of course also Casey.

    It is a wonder that you manage at home and remember all your tablets. I really hope you have doctors that know this illlness that for some people is like hell. I know. Not for me though. But for you it must be. I feel so sorry for you because you sounds to be a happy person near to a laugh. Perhaps you could be my grandchild. I do not know.

    So take my thoughts of you from here in Stockholm. Love to Casey as usual from Kerstin

  • Wow. I genuinely thought that everyone gets dizzy spells and those voodoo doll head pains. I can't remember when I didn't get them from time to time. I will add that to the list of things to tell my gp when we're building my case for immunology referral.

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