Sticky Blood-Hughes Syndrome Support

do you think stem cell research would help us have healthy bodies again

i would like to know how you were diagnosed and how you developed your first symtoms.. did anyone have any pulmonary embolism. i had three and survived them.. i was a marathon runner and running long distance and did not even know. should i be upset because i was misdiagnosed and lost my job.. i have so many questions to ask. hope no one minds if i ask questions]

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My diagnosis came after 3 major clots, the first was an arterial clot at the back of the head complicated with a bleed as well causing a massive stroke, the second a large DVT ankle to knee (L) , and the third a PE. The latter two both came within 10 days whilst post op to the first.

My stroke short story reads: 5 day coma part of 10 days on life support, 4 weeks quadruplegic, walked out of a rehab hospital 5 weeks later.

a full story can be found at


hi runner- back in 2009 august 31- went to e.r. with lower left lumbar shotting pains,work construction so not to unusual, except the shotting part.the only other symtoms were one week before i was sitting in lounge chair and began to tingle over every part of my body- bar none. went to e.r. , they found cluster of clots in right lung , went on to find left lung entire bottom 1 inch thick clot across lung. in the next couple of days ., clots found in left leg . groin,neck , left armpit. i really didnt have any real symtoms , all vitals were normal. they told me 1.5 to 2 years to rid myself of clots. but by febuary 17 th of 2010 a dia. aps. warfaran started. they also found all clots were gone ,they were amazed, had never heard of this here in n.h.speed up to just last few weeks, rheumy found me to have three other major blood disorders, also avascular necrosis in hips ,knees, and feet. so far looks like step one, but all three very sore, will be going back to hanover for m.r.i. to tell just how bad it has damaged the joints as far as the 4 blood problems still on warfaran , but also 200 ml hydroxychloroquine [ plaquenil] for 1 st few weeks then increase to 400 ml per day plus warfaran . please dont worry of asking anything thats on your mind , as you will find knowledge, compassion and good ears to knaw on wecome jet


Dvt pregnancy

Low bith weight baby because of clotting in the placenter.Late miscarriages ( would be still births now.)

Finally diagnoses as I went to have blood test for factor five leidons as my sister had just be diagnosed for that before she was put on hrt.she wasn't allowed to have it.

I have factor five leidons. and was tested positive for Hughes syndrome.? 20 yrs ago.

Put on Asprin until I Had heart attack at 51. Given Heparin in hospital which really improved fog.

So eventually went back on it the Warfarin..

I really think Hormones have a great part in this.Menopause =Heart attack

Pregnancy = dvt small birth weight baby and losses.

The only time I have had any energy was when I was due to have my period.

I was once put on fondapranex (type of heparin I think) ? spelling which made me feels as good, couldn't stay on it because it made my heparin assay to high? what was in it ? love to know as a smaller dose may have done the trick


? Family history.

Dad and his brother both had a dvt

Mum has always had bad joint pains, hasn't been diagnosed with anything

Would be lovely if a cure was found

Love Karen xx


Your description of your stroke was identical to mine and its the first time somebody has put into words how I felt when it happened to me. I had a terrible headache though and lost central left vision too. I did not have the bleed which no doubt gave you the added problems that put you in the coma after the surgery. I applaud your tenacity and determination which has no doubt helped you to get where you are today.

I too have had some good results which again was because I pushed myself to do things early on after being told that the more you do and repeat doing, the more the brain remaps a new pathway. As you no doubt know its dam hardwork but worth it in the end.

I too have problems when I am tired or when I have a flare of one of my other conditions but compared to where I was in January (when I had the Stroke) there is no comparison. I use a wheelchair for outside unless it is just for going in and out. Anything too far is still out of the question. I got no rehab until July and then it was pretty tame and mostly to help with balance issues. As far as they are concerned I am coping and there are people a lot worse off then me so I don't need any help. Had I had what you had then maybe I would be back to pre stroke condition.

I am so pleased things worked out for you - you had an angel looking over you thats for sure!


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