Sticky Blood-Hughes Syndrome Support
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Sorry tired tonight, hope this makes sence.

This morning unless I was dreaming it said their was going to be more money for research into Dementure. I hope this will also include Hughes syndrome as treatment can make such a difference.

I feel so frustrated that its not mentioned, what can we do ?

Love Karen xx

5 Replies

Im sorry, I'm new to all of this, what is dementure? How does it relate to APS?


Noobie :)


Hi Karen

Sorry, but dementia is a completely different condition to Hughes syndrome and the research will be looking at entirely separate treatment.

The reason that it is getting all the attention is the realisation of the aging demographics - the numbers of people who will have dementia compared to those with Hughes syndrome will be enormous, making it viable to the health economics.


Sometimes,on the odd occasion it is thought that somebody may have dementia... and it turns out it is the sticky blood and brain fog! Mary F x this may be the confused area in the media.


They are two different conditions......but I agree there should be more media on Hughes, I am trying to do my bit in Derbyshire / Staffordshire by going to radio stations, newspapers & putting leaflets & posters wherever I can......but it should be made so much more public by someone that could make such a difference ( like somebody's ok I shant mention any names!! )

Hope you are well, lets all do our bit......every little helps!!! x


Sorry spelling has always been bad ,Dementia

I thought that their is a type of Dementia caused by lack of blood supply to the brain

Multi infarct dementia, ( small clots)

I believe that my memory would not have been so bad if I had been treated with Warfarin, years ago.

I think my epilepsy was also caused by a blood clot too.

Sorry horrible thing to suggest, but I think their is some evidence, please put me right if I am wrong.

I did have brain fog in the begining much improved with Clexane.

My Heart attack was also caused by a clot before treatment must say it saved my life.

Love Karen xx

Hi Suzypaws, I am well thanks, how are you? I have also tried to spread the information, for what good it does. i agree it needs someone important.

I had every symptom in the book, so you would think my neurologist would know. He actually told me it didn't exist. I am very tempted to sue him.

St Thomas' is great though

Love Karen xx

Any idea's anyone !


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