Sticky Blood-Hughes Syndrome Support

My experience

It was my freshman year, Thanksgiving Break, I broke out into a full body rash. My mother took me to the nearest hospital after my throat began to tickle. I got a steroid shot and was sent on my way. Well the evil rash would not go away, and I was miserable. After weeks of suffering with it, my mom took me to our family doctor. He sent us to the allergist. The allergist turned my life upside down. No more cinnamon and artificial dyes in food or drugs. And no Nickel contact.

I soon learned to adjust to me new eating lifestyle and things were well. Then, Junior year, back to football, my mother notices my arms covered in bruises. I mean covered, like I was mugged. So I had to go get some tests done. My PTINR came back all out of whack and I started the fun of jumbling in and out of football and wrestling.

My journey took me through multiple doctors and specialists. First the hemotologist, then the dermatologist, then the immunalogist, then finallly the rheumatologist. She diagnosed me with Hughes Syndrome. Now I get to enjoy the pleasures of this disease and their effects on my life.

10 Replies

Hello and join the club etc. I know it can all be a bit much to take in but I am very heartened to hear that you had a rheumatologist and associated team who were prepared to work out fairly swiftly what was going on... some of us unfortunately don't get diagnosed for years. I hope things settle down for you and we carry on hearing from you on here. Best Wishes M x


Hi there - frustrating isn't it!! I was diagnosed at the very beginning of my second year at university aged 19 - it's a really hard time to get that news. I was playing football (soccer) for the uni and competing at snowboarding and all sorts and was told to stop - I told the docs where to go but I took the pills religiously, accepted the treatment and became tetotal for a few years.

My advice is to try and let go of the anger - Hughes & Lupus has not really stopped me from doing anything I REALLY wanted to - I taught horse riding in California for 4 months 6 months after diagnosis because i was so determined that this illness wouldn't dictate my life!! i know it's easier said than done but there are two groups of people out there the victims and the fighters and it's so much easier to get on with your life when you don't have to fight your own brain!

I hope things get easier but you know where we are if you need us!

Take care



Well said and I know it is easier for some... I am just about to go to Poland where at times it has been minus 30 to try and take the children for a very cheap ski holiday. Life for me is for living! M x ps 46 and bad tempered! Mx


Hi there, I had a mysterious full body rash and sore throat about 15 years ago. First I was told I might have measles. Then I was told it was psoriasis. I was given UV light treatment and coaltar soaps. My hands and feet were smothered in vaseline and bandaged. After 3 months (still going to work and being a mum of a busy 3 year old and with my Dad in hospital) I tried acupuncture and after 6 months every single spot had gone. Apart from the ocasional spot on elbows and knees it has never returned. No one has never associated it with my Hughes before, I didn't know it could be related.

But I do agree with the others, life is for the living so get out there and live it.

Sharon x


I do have very bad psoriatic arthropathy the whole show... however I do come out in a rash if I encounter anybody with strep... it does this and then dies down again, obviously my strangely wired immune system does not like it!


This is interesting. I had a all over body rash and sore throat when all my problems started when I was 18. I believe they call it Petechia. I was told this was Glandular Fever or what is now known better as "Mono" and EBV.

The interesting thing is that EBV can go on to to cause Lupus, APS, Sjogrens and RA which seems to be what has happened in so many cases.

If only I had known then what I was in for......Apart from miscarriages which in those days were just not investigated in the early stages, the other symptoms have waxed and waned. I suppose I should be grateful that the serious stuff took awhile to come out in comparison to lots of others on here.


Happy Snowy Sunday!!!

I had scarlett fever at 18 followed by pleurasy ... I remember sitting in a room on my own to take my A Levels and not being able to answer any of the questions because my head hurt so much and I was so feverish I was actually shaking. Do you think this could have been the beginning of everything?

Keep warm

Love Sharon x


yup - looking back we realised that my getting shingles aged 18 was probably the start of everything, but it would have been a miracle to have been diagnosed for there - everyone put it down to stress!!

hey-ho - you live an learn!



Hi Sharon

you probably right hon. I had repeated bouts of glandular fever n tonsilitus as a teenager, took some of the fun out of college (not all tho) !!

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


Hi Benboy

Welcome and glad you found us, sorry for whats brought you here.

It`s an awful shock and takes some adjusting, come here have a rant, a moan and ask away hon if we can help we will.

I suffer with awful allergies and carry epipen in case reactions get worse, people ask what i`m allergic to, the answer Life!!!

This disease gets us all down at times, people that love us say take it easy, rest etc, but being stubborn and not letting it beat us helps. Keep doing things you want to do, don`t let it limit your life. Like Tasch our resident dare devil does, Wow she`s an inspiration to us all!!!

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


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