Hi all Davidj - I'm just wondering how many people that have lupus have Hughes ? Been diagnosed with lupus for 8 years just found out about the Hughes last year. Is this a direct corolatatstion ? Www.mengetlupustoo.healthunlocked.com for men women & children or if your supporting someone with lupus.
Thank you
Davidj. From Tampa Florida
Hi DavidJ
About 30% of people with lupus will have antiphospholipid antibodies (aPL) - please see: hughes-syndrome.org/about-h....
As above, people do get (understandably) confused when they are diagnosed with APS but are told they are lupus anticoagulant positive. Again, please see:
hughes-syndrome.org/about-h...
for more information about the blood tests.
Hope this helps 
On our old website - Kate, we use do have that great venn diagram of Hughes and Lupus with that little section representing the people that have both, such as myself, so we still have that diagram floating about, as I used to share that link with people. Mary F x
No sorry Mary - it was decided it was too confusing for people as it implies that people with Hughes will go on to develop lupus and this simply isn't true. It's still in the 2001 book by Graham Hughes if you want to scan it though. Kx
Thanks.. I read the diagram just as being an overlap between some having both, that little section in the middle which of course applies to myself and family. Thanks for clarification. Mary F x
Hi Davidj I was diagnosed in the very early '80's at Tommie’s with Lupus (SLE) and I did not get diagnosed with APS until I have my first clotting episode in the early '90's. All my female family going back as far as my Grandmother and Great Aunt to my Mother & Aunt and my own Sister all have a history of Lupus and clotting episodes/PE’s & strokes. I know it's a debatable fact as to whether there is in fact a hereditary link or not - Interestingly there is current research taking place in Barcelona concerning this very subject at the moment, but as to whether the two are actually linked or not I don’t know. At the Lupus clinic I attend here in Spain I am the only person who has APS as well as Lupus. As Kate pointed out statistics state that only 30% of Lupus patients go on to get APS too, which is quite a small amount in terms of these diseases on a worldwide basis isn't it. I thought your question was very interesting however, I don’t really think that I perhaps gave you the answer you were looking for!
Good luck from here InSpain xxx
There so much infor from so many differnt countries would be great if it was all in one place to read it. Imagine that would take a lot of work. Right now I'm taking a drug that isn't approved it the us, get it from Europe . Makes the platlets not stickey. I was bragging about how well it worked, in the past years I've had heart attacks , strokes , or lungs , brain ( that was weird losing memory ) not what ya would think) anyway after being on this med for bout 8 months I now have one in my leg? How is this possible when in INR is @ 4.5 with this new med? Guess that's what research is for ! Thank you for your response ! I've learned more from these sites that drs n Internet . I had a great uncle that had lupus dies from a clot to his heart. Never told anyone because of the stigma of women only get lupus .only until his death certificate said " complications of lupus . Did my aunt know. He apperntly pleaded with the dr, being in both world wars he was afraid people would think he was gay . That's why I started my own.! Get as much info out the better! As much info we can get out there the better! We are all in this together ! good luck to you & everyone plagued with this, I pray everyday they find a cure.
Davidj. Www.mengetlupustoo.health.unlocked.com
My late father would have had lupus as well as hughes. Quite clearly it happens across many family members in some families. MaryF
Sorry to hear about your Dad, my deepest sympathy!
Then how can they say its not hereditary?
Along with a lot of good info there just as much bad. This is life we are talking about . Frustrates me when you don't know what to believe!
Many many blessings
Davidj
Www.mengetlupustoo.healthunlocked.com
I was first diagnosed with APLS, and then about a year later, I was diagnosed with Lupus. I suspect Lupus came first, but it takes forever to get a Lupus diagnosis. APLS is easier to diagnose because you can take a couple of blood tests and have a definitive answer. Lupus isn't that simple. At any rate, yes, they do overlap with some people.
I was diagnosed with Lupus years ago but it was mild enough so I never took any meds and led my life as normal. Then years later I got a DVT which went untreated and ended up with a PE...Dr Beverley Hunt, looked me over and suspected APS, she was right and now I take Warfarin for the APS...my Lupus only presents itself sometimes and I have learnt to deal with it as and when it does occur. (photo-sensitivity and extreme reactions to insect bites mainly) The aches and pains, brain fog etc are always there lurking, however I know I am lucky as I have it mild and I know some people suffer much more
Working with Hughes and Lupus
Hughes poster link!
Is there a link between hemangiomas and Hughes Syndrome.
