Sticky Blood-Hughes Syndrome Support

Prof Hughes' December 2011 blog - last blog!

This is my last blog for some months.

Our young charity is growing fast.

Thanks to the efforts of Lynne Kirwin and Kate Hindle, and their dedicated helpers, we are beginning to see a mushrooming of interest in the syndrome, and some tangible results. For example, the survey carried out by Mary McDonald and Professor Peter Donnan on the awareness of Hughes syndrome, provided the basis for a paper (Antiphospholipid antibody testing – slow progress?) which is to be published shortly in a major medical journal: the International Journal of Clinical Practice.

We recently welcomed Estelle Morris, Baroness of Yardley, to be the chairman of our trustee meetings. Estelle, a prominent member of the House of Lords, former MP and member of the cabinet has already proved a great friend to our charity and a loyal supporter of our work.

Talking of supporters, this month was the tenth anniversary of the death of Louise Gergel whose parents are John and Linda Wolffe. Over the past ten years, John and Linda, along with their friends and family, have raised enough money to fund the salary of an APS research fellow – a truly superlative effort – and a wonderful homage to their lost daughter.

This year saw the publication of three new books (rather like London buses). Two were produced by Dr Shirish Sangle and myself and published by Springer – Hughes syndrome and Lupus, both in the Springer series of books for students. The third, published earlier, Tales of the Flying Doctor (and the story behind Hughes syndrome) was published by Hayward Medical Communications and gives, I hope, a humorous account of life as, first, a medical student, and second, of a fledgling doctor.

December is not a month to travel – tube strikes, packed airports. Luckily for me, therefore, there was only one overseas talk. A Saturday morning meeting on advances in medicine - in Brussels. A meeting organised by Professor Fred Houssiau – now a leading Belgian expert in lupus and other topics (including Hughes syndrome).

And the joy! The Eurostar – boarding and train in London (St Pancras) and arriving a mere two hours later in Brussels! The only way to travel!

This is the 36th monthly blog. Three years. I felt that it was time to pull back a little. I plan to continue the blog, but on a quarterly basis. I hope that this series of 36 ‘cases of the month’ has proved helpful. I am touched by the feedback you have offered. Many thanks.

Case of the Month

‘Taking the history’ from a patient is the first and most important part of a medical consultation. Sometimes the enormity of the process is overwhelming.

Mrs S.U. arrived for her appointment without a GP’s referral letter or any other documents – there had been some confusion. The 51 year old was, however, calm and unflustered. Bit by bit the history unfolded …

Doctor: “Did you have any childhood illnesses?”

Mrs S.U: “Not until the age of 14 when I had a fit in the middle of York market”.

Doctor: “Was any firm diagnosis made?”

Mrs S.U: “I was seen by a specialist and had tests. At first, there was no clear diagnosis. But the I had two further seizures, and for a year or two, I was put on epilepsy tablets”.

Doctor: “Any headaches or other symptoms?”

Mrs S.U: “I started to get frequent headaches, as well as funny pins and needles in my arms and legs. The doctors suspected multiple sclerosis. However, things didn’t progress, and in my twenties I was well apart from occasional migraine”.

Doctor: “Did you have any pregnancies?”

Mrs S.U: “My first pregnancy ended at eight months, when the baby died. The doctors couldn’t find a cause. The little boy seemed normal. Then I had two successful pregnancies and I have two healthy grown up daughters. My fourth pregnancy miscarried at four months. My husband and I decided then that ‘enough was enough’”.

Doctor: “In your thirties?”

Mrs S.U: “I was reasonably well, working full time in an office. I suppose it was about the age of forty, ten years ago, when new things happened. I started to suffer quite severe tummy pains – oddly enough, about an hour or so after a meal”.

Doctor: “Was any cause found?”

Mrs S.U: “No. I had scans and an endoscopy. Nothing. I tried Gaviscon and Zantac, and even tried a gluten-free diet but nothing really helped – apart from taking more frequent meals.

Doctor: “Any other symptoms?”

Mrs S.U: “Well, over the past two to three years, I have had a number of attacks of giddiness – first I was told it was Menieres disease, but I think they are not so certain now. Then, for the past few years, I have had a mixture of fatigue and aches and pains. The headaches have been bad”.

Doctor: “Any memory problems?”

Mrs S.U: “Oh yes! I used to have a wonderful memory but recently, it seems to have deserted me. I even forgot to collect the GP’s letter I had promised to bring to this appointment. I am a little concerned because I have had two episodes of numbness down one side of my body. It was then that my doctors started aspirin”.

Doctor: “Although, I don’t have a GP’s letter, clearly the diagnosis of Hughes syndrome was suspected?”

Mrs S.U: “The story is interesting: something of a ‘Eureka moment’ in fact. One evening, my husband came running upstairs – “I’ve got it”. And he had! He had been scouring the internet and had come across the Hughes Syndrome Foundation’s website (”.

All the features added up. Made sense. And to their credit, Mrs S.U’s hospital doctor and GP followed up on the suggestion that Hughes syndrome was at least a part of the complex puzzle. They re-investigated her and found positive antiphospholipid antibody (aPL) tests. She was also found to have dry eyes (possible Sjogren’s) and a slight heart murmur – thought not to be serious. Her doctors started her on aspirin and Plaquenil.

What is this patient teaching us?

Firstly, of the many alternative diagnoses this patient received – migraine, epilepsy, multiple sclerosis, fibromyalgia, celiac, Sjogrens etc, some were helpful, some not.

Secondly, Hughes syndrome is complex. Like other autoimmune conditions such as lupus, it can present in a wide variety of guises.

Mrs S.U.’s early features included fits and migraine. A study carried out by Cimaz et al in Milan suggests that up to one in five cases of idiopathic (where no obvious cause is found) epilepsy were found to be aPL positive.

The tragic pregnancy history is also telling. The loss of a baby at eight months may have a number of causes – but high on the list is the potentially preventable condition, Hughes syndrome.

Later features include abdominal pain – possibly ‘abdominal angina’ – pain after a big meal because the blood supply needed for digestion is impaired. Add to that Sjogren’s (dry eyes, and aches and pains), heart murmurs, balance problems and memory loss – no wonder Mrs S.U.’s husband rushed up the stairs!

Mrs S.U. may well require more substantive anti-clotting treatment, such as warfarin. She is one of Britain’s heroes. I think she will do well.

If anyone wants the links to the articles Prof Hughes has mentioned please go to his blog section on our main website: and you will be able to click on them from there - thanks, KH

7 Replies

I fully understand why you will only be doing quarterly Blogs from now on but I will miss them every month as they are informative, interesting and very entertaining!


Many thanks for your blogs. So many read like my own story.

I will look forward to the quarterly ones in the future.

Also a big thank you to all You and all the Doctors who work so tirelessly on the Hughes patients behalf.

Special thanks to your colleague Dr Khamashta, for believing me and then looking after me.

Best wishes


I also echo everything Suzanne says. However I would much rather have them quarterly than not at all so will eagerly look forward to March.

No doubt they will then be a triple whammy of all that we have come to love and look forward to!


Thankyou so much for the blogs.I will also be looking foward to the quarterly ones.

Really pleased to see that research shows 1in 5 cases of idopathic Epilepsy was related to Hughes Syndrome. Think i got that right didn't i Hopefully the Neurolgists will now take some notice.



I too will miss your blogs, look foward to the quarterly ones. I very much appreciate and thank you for all the effort you and other doctors put into finding ways to make our lives better.

Take care gentle hugs sheena xxxxxx :-) :-) :-)


Hi professor Hughes,

Will miss seeing your incredible insights each month, but so glad will still be able to read them quartily, thank you for everything you are and do, you are an amazing Clinician, a Brilliant Diagnostion, and wonderful human being, for which the world is a better place for you being in it.


Will be putting all the old blogs on the forum so you can all read them watch this space



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