Fantastic news - a new centre in Portugal named after Professor Graham Hughes

[MaryF]

As you are aware to help with communication and awareness raising, both in the UK and across Europe and beyond, our name change of Sticky Blood Hughes Syndrome, still clearly has Professor Graham's Hughes name in our description/banner. Some medical staff know this disease as Antiphsopholipid Syndrome/APS etc, which is also included.

This obvious use for the right reasons of Professor Graham Hughes' name, will never change, as without him, and his continuing excellent work, my family for one, and many other patients may have been left in the dark ages, along with countless others. I enclose here a recent photograph of him in Portugal and the write up to go with it. Thank you Professor Graham Hughes for your excellent medical advice, decades of work, and your continuing training of other medical staff! Thank you for all those incredible years so far, your help is second to none.

MaryF

_____________________________________________________________________________________

For immediate release

HCA Healthcare UK’s Professor Graham Hughes honoured with clinic in Portugal

On Thursday 23rd June, a new clinic for lupus and Hughes Syndrome patients was opened in honour of Professor Graham Hughes, Head of The London Lupus Centre at London Bridge Hospital (part of HCA Healthcare UK).

The clinic in Madeira – named “The Graham Hughes Centre for Auto-immune Diseases” – was dedicated to Professor Hughes in honour of his lifelong commitment to research and treatment of lupus and his discovery of the related condition Hughes Syndrome, now recognised as the most common, treatable cause of recurrent miscarriage.

Also present were the mayor and dignitaries from Madeira, doctors from all over Portugal, and lupus specialists from as far afield as the USA, Barcelona, Israel and Paris.

Hughes Syndrome, sometimes known as ‘sticky blood’, was discovered in 1983. It is a condition in which the blood has an increased tendency to clot or to ‘sludge’, and can affect any part of the body, although two organs commonly affected are the brain and – in pregnancy – the placenta.

Brain symptoms range from migraine, stroke and memory loss to ‘atypical multiple sclerosis’, whilst clotting in the placenta can lead to poor foetal growth and a tendency to miscarriage, with some women suffering a dozen or more miscarriages.

Professor Hughes said: “It is a great honour to be recognised, but most of all I am delighted that the opening of this clinic will see more patients receiving life changing treatment in this part of the world.

“I see many people struggling with lupus and with Hughes Syndrome and, for women who want to have children, it can seem a debilitating condition. But the good news is that it is easily treatable with anticoagulation medication and more and more patients now have access to the treatments they need.”

PHOTO: Professor Hughes delivers a speech to mark the opening of The Graham Hughes Centre for Auto-immune Diseases in Madeira, Portugal

[Manofmendip]

Great news about a great man.

[MaryF Administrator in reply to Manofmendip]

Yes, the great news continues. MaryF

[MaryF Administrator]

It certainly is, as usual! MaryF

[Tlove]

Well deserved - am here with my 6 day old twins thanks to his work!!

[MaryF Administrator in reply to Tlove]

Well said. I echo that with all of my three children. MaryF

[lynzy in reply to Tlove]

Congratulations on your wonderful news

[MaryF Administrator in reply to Tlove]

and congratulations, what lovely news you have. MaryF

[Ozchick]

Go Prof Hughes!!!

[MaryF Administrator in reply to Ozchick]

Indeed! MaryF

[lynzy]

Thats brilliant news, and the awareness of hughes spreads even further around the world. The effects of this condition and early identification of it can lead to people like us not having to suffer in a 'grey' world, with sometimes no light at the end of the tunnel.

[MaryF Administrator in reply to lynzy]

Very well put! MaryF

[wales]

Fantastic news Prof Hughes saved my life 8 years ago by diagnosing APS lupus and Sjrogens .i am now well but in the dark days before I met him I was so ill mainly down to Drs and consultants having little knowledge or interest in the diseases .i can remember walking out of the London Bridge Hospital thinking the first time I saw him thinking yes I am going to get better at last .it is wonderful that this centre has been named after him he so deserves this great honour he's an amazing man .

[MaryF Administrator in reply to wales]

I am really pleased things so improved for you. MaryF

[wales]

Thank you Mary .this site has also helped me so much I never feel I'm alone anymore

[MaryF Administrator in reply to wales]

That is good news and thank you for the feedback. MaryF

[GinaD]

Thank you so much for sharing. You've made my day.

Gina

[MaryF Administrator in reply to GinaD]

Keep well. MaryF

[Hidden]

"causes blood to SLUDGE"....exactly what I experienced..."clot" was not proper description when I share with others...sludge is perfect word

[MaryF Administrator in reply to Hidden]

Yes it has a nice ring to it....'sludge' MaryF

[luisal]

Very good news and many thanks for posting it. By the way, is there a list of health centers around the world dedicated to APS?

[MaryF Administrator in reply to luisal]

Not that I know of! However he is well known and appreciated for his excellent work, world wide. MaryF

[luisal]

Ok. But wouldn' t it be a great help for patients not living in the UK to have access to such a list?

[MaryF Administrator in reply to luisal]

Yes it would be, there are useful names on here: apsaction.com/ and as you are aware probably, I and my colleagues try very hard to find possible contacts in other countries... MaryF

[luisal]

Indeed and I am very grateful for that! I guess sometimes it will be a good idea to check with a specialized center if you happen to visit a city hosting one.

[MaryF Administrator in reply to luisal]

Notice in this post/blog by Professor G Hughes, mention of the doctor in your own country - Argentina:

Professor Graham Hughes' Monthly Blog May 2016 (thyroid is mentioned several times)

MaryF 2 months ago 4 Replies

Dear all, enclosing the latest blog from Professor Hughes' who as well as being pretty forensic about unearthing Hughes Syndrome/APS - Sticky Blood - Antiphospholipid Syndrome, also does actively investigate the patient for any hint of thyroid problems and other conditions related, especially autoimmune:

Monthly Blog

May 2016

I receive daily emails regarding Hughes syndrome. This week, one example from Kazakhstan:

“Dear Dr Hughes…since the number of patients with Hughes syndrome in Kazakhstan is big, some of them are just weird.”

The word is spreading. In the UK a new initiative to help spread information about Hughes syndrome has come from Lynn Faulds-Wood (whom many of you will know from her BBC TV programme “Watchdog”) and Mary Foord-Brown (a patient). Mary sends me (almost daily) headlines from newspapers which are possibly relevant to Hughes syndrome:

“Pregnant teenager and her unborn baby killed by a clot”

“The cause of your migraine revealed”

“Scientists identify cause of multiple miscarriages for the first time”

“Doctors blame students almost fatal brain blood clot on the contraceptive pill”

“These women almost died from heart attacks but they were all in their 30s and low risk”

“Hillary Clinton’s doctor gives her clean bill of health after 2012 concussion but says she is still on blood thinners for a clot in her head and takes thyroid pills every day”.

Before this month’s “Patient of the Month” I will mention two medical conferences - one coming soon and one held a few weeks ago in Leipzig, Germany.

Firstly, Dr Paula Alba, professor of medicine in Argentina and organiser of Argentina’s national rheumatology meeting, has planned a plenary lecture entitled “The Graham Hughes Lecture”. She invited me to give a short video presentation to open the meeting. Twelve minutes. What do I concentrate on? In the event, I chose four topics which I felt needed focussing on by young research fellows. These were - the study of seizures in MS, the study of younger women with angina, the assessment of the risk of bone fracture, and (of great importance to me) the study of so-called “seronegative arthritis”.

The second conference is, I believe, one of the most important in modern medicine’s calendar. The International Conference of Autoimmunity, conceived and organised by a good friend, Yehuda Shoenfeld. This meeting is unfailingly stimulating - its 1000 presentations, posters and abstracts covering the whole of autoimmunity, from lupus to thyroid; from silicone to bacteria; from coeliac to autism. This varied programme genuinely stimulates the brain cells.

Patient of the Month

A Jigsaw Puzzle

The Autoimmune Conference highlighted what we all suspect – that there is quite an overlap between many of these diseases.

In previous blogs, I have often talked about “the big three” – Hughes syndrome, thyroid problems and Sjogren’s syndrome. This month my “Patient of the Month” illustrates how complex the links can be.

Miss C.R., a 36-year-old computer expert was referred by a colleague in Cambridge for a second opinion regarding her many problems. She had suffered a small number of TIAs (transient ischemic attacks/mini strokes). She also had problems with cardiac rhythm, low blood pressure, food intolerance, and joint problems including a dislocated hip. Investigations in Cambridge had found positive anticardiolipin antibodies and positive anti-thyroid antibodies.

Her past history was long. As a schoolgirl she had suffered frequent fainting attacks. She had also suffered from a number of joint dislocations and was found to be ‘double jointed’. At the age of 18 she suffered from a prolonged attack of glandular fever, which left her with ongoing fatigue and aches and pains labelled as fibromyalgia – a diagnosis later changed to Sjogren’s. In her 20s she suffered from frequent headaches. She was investigated for possible coeliac disease and felt better on a gluten free diet.

And so on….

To cut a long story short, I will summarise and try to piece together some of the pieces of the jigsaw.

1. She was ‘double jointed’ – and found to have a condition called E-D (Ehlers Danlos syndrome)

2. It is now recognised that some E-D patients suffer from “autonomic” nerve problems – leading, for example, to drops in blood pressure on standing (e.g. fainting in school)

3. In its extreme form it is known as POTS (Postural Orthostatic Tachycardia Syndrome)

4. We have recently reported a link between some cases of Hughes syndrome and POTS (1)

5. This patient has a number of other possible autoimmune features –Sjogren’s, gluten sensitivity, thyroid

6. Often these autoimmune features are triggered by a glandular fever viral illness in the teens

Highly complex -but of significance for our patient? Well, control of what was found to be an underactive thyroid, a continuation of her gluten free diet, and treatment with quinine (Plaquenil) for the Sjogren’s, all helped. And very significantly, warfarin anticoagulation for the worrying TIAs brought about not only improvement in the Hughes syndrome problems but, interestingly, in some of the POTS features.

It teaches us that, given persistence, even the most complex of medical illnesses can be improved.

References: 1. Hughes G.R.V (30 years on)

Professor Graham R V Hughes MD FRCP

London Lupus Centre

London Bridge Hospital londonlupuscentre.co.uk

MaryF

MaryF

[luisal in reply to luisal]

Yes Mary, I have googled her sometime ago. She lives in a different city (Cordoba), at 5 hours ride from where I live. Maybe is time to plan a trip to Cordoba. All my bests,

[MaryF Administrator in reply to luisal]

If you manage to go there, do tell us how it goes. MaryF

[luisal in reply to MaryF]

I will Mary. Do take care!

[jetjetjet]

Congrats to Professor Hughes for a well deserved Honor . for his many years and dedication to this horrible disease.

[MaryF Administrator in reply to jetjetjet]

Yes it is highly deserved and will continue to be. MaryF

[Lure2]

Thank you Mary for what you do for us all!

Kerstin

[MaryF Administrator in reply to Lure2]

and a big thank you to you, I wonder if you yourself, have access to your Swedish Magazine article being translated into English, as would love to put it on here! MaryF

[jetjetjet in reply to MaryF]

Ya Buddy where is it ??? Just joking - Well i start with the 3 new Dc's -Two surgeons and the people { Jenn } to try to get new orthotics to try to stop this constant pain in my feet and the swelling {I certainly don't need another episode like 2015 , it took a year of treatment and almost losing my left foot before we finally got it to heal .-God is it ever hot here 92 degree's today i am seating just sitting here typing I can't take the heat and i am not suppose to be in the sun so long pants and long sleeve shirts and a hat. Going to my oldest Sisters today for a cook out .I won't last long there ..my seat is sweating HA HA I wish i could call kirsten on the phone but she can't speak English { maybe it would be good she could keep the message and have a translator.i can call most places in the world for eight cents a minute. i would like to talk to everyone }

[Lure2 in reply to MaryF]

I will certainly find out. Thanks Mary.

Kerstin

[jetjetjet]

That skype would be good where you have a camera and can see the people you are talking to .That would be great . .