I have Anti-Phospholipids syndrome (known as Hughes syndrome) I was lucky enough to meet Dr. Hughes who did the tests for me and discovered I have the Hughes syndrome before he retired.
I also have Primary Sjogren’s syndrome
and Polyglucosan myopathy pseudo obstruction – in association with
gastrointestinal neuro-muscular disorder of the gut (for short it is called Myopathy Pseudo-obstruction)
I would like to know if anyone who has the Hughes syndrome was told that it is related with other diseases.
Written by
dalalf
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Yes, Like you he diagnosed me with Hughes. He also told me that Hughes, Sjogrens, Thyroid Antibodies (Hashimotos), Fibro, Cardiac Syndrome X and Celiac Disease are all linked. There is also a link between Hughes and Lupus and these others. This does not mean to say that just because you have one you will have or acquire the others though!
When I saw Dr Hughes he told me that autoimmune disorders frequently come in 3s! I have APS, Hashimoto's and was also making antibodies against my ovaries.
thank you HughesPatient and brendabell for your information as recently I had an operation on my right shoulder and need to do another on the left as I have Osteoarthritis and my Gi professor Silk was doing a research for the Pseudo-Obstruction and they found I have some kind of Glycogen Storage disease in the intestine and now I'm one out of five known people in the world who has it, they don't know much about it as the grant that they got was finished and they ended the research not having more funds. The doctors who did it will publish the report in a few months and maybe I will know a bit more, as I wanted to know if it's connected to Hughes and Sjogrens. I'll keep you posted.
This is a common ‘autoimmune’ condition affecting up to 1 in 1000 of the female population. The immune system is overactive, with the resultant over-production of a large number of antibodies. In approximately 1 in 5 lupus patients, these antibodies include antiphospholipid antibodies, with the resultant problems of thrombosis and miscarriage.
Sjögren’s Syndrome
In many ways, this syndrome which causes dry eyes, dry mouth and aches and pains, can be regarded as a milder version of lupus, usually affecting a slightly older age group (50-60 year olds). Again, some people with Sjögren’s Syndrome product antiphospholipid antibodies and can develop features of Hughes Syndrome.
Fibromyalgia
Patients with widespread aches and pains are sometimes diagnosed as having fibromyalgia or ‘M.E.’. Some of these patients, in fact, may have one of the conditions described here such as Sjögren’s Syndrome.
Thyroid disease
Abnormalities of the immune system can also affect the thyroid and it is not uncommon, for example, to find a history of over-active of even under-active thyroid disease in relatives of Hughes Syndrome patients.
Other clotting disorders
A number of other clotting (“pro-thrombotic”) disorders have been described, and clearly, must be considered when making the diagnosis.
The commonest is factor V Leiden – a hereditary condition which leads to vein clots but not artery clots or strokes. Others rarer conditions include disorders of prothrombin, protein C and protein S.
Hi there, my current array is hughes, psoriatic arthopathy, sjgroens, hypothyroid and adrenal problems... hoepfully no more to be found, as that is quite enough THANK YOU etc etc Mary F x
I have been offline for a while so had not read your story.
I too have Hughes, lupus symptoms, fibromyalgia, raynauds etc. Have been told by gastro surgeon, i quote " you are going to turn out to have some weird autoimmune disease" mmmm thanks for that!!!!!!
So many of us have overlapping conditions that there has to be a link!!!
Thanks a lot for your replies but like me sometimes you feel so low and think this will never end and hate spending my life in doctoros clinics, and what is the purpose of keep fighting just to stay alive, as we look at normal people and think why can't I do things they do. I'm not the type who sits and talk about my misfortune but still wish to live somewhat as normal a life as possible.
Hi I have cardiac syndrome x, Sjogren's syndrome and Factor V Leiden. I was unable to maintain my pregnancies. On Monday, I am having an angiogram to see if any of my major coronary arteries are blocked. It is not without risk and I am sure my major arteries will be fine.... and I will be left with the arm, back chest and teeth pain. My suspicion is that my cardiac syndrome x comes from a link between Factor V and Sjogren's syndrome, but not enough research has been done into this for a clear connection to be demonstrated. I'd bet I'm not alone though and reading some of these posts has increased my suspicions.
I had sub-total colectomy many years ago, I have Hughes Syndrome, Sjogren's syndrome, Polyglucosan myopathy pseudo obstruction – in association with gastrointestinal neuro-muscular disorder of the gut, I had nodules in my thyroid glands, that were 3rd stage pre-cancer, my right gland and ½ of my left gland were removed.
Glycogen Storage disease in the intestine and Professor Silk contacted gastroenterologists in most countries found that I'm one out of five people who has it but he hasn't finished publishing his research once it is published they will find much more. Four months ago I had an operation on my right shoulder due to severe osteoarthritis inflammation and waiting to become better to do the left one. I'm sure there is more to it than Hughes syndrome and Sjogren's, but as they haven't found out what is causing a lot of those autoimmune diseases as I think one triggers others we will have to wait and try to make the best of our lives.
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