Question

[MJPrachyl]

Is Hughes Syndrome the same as Antiphospholipid Antibody Disorder?

[MaryF Administrator]

Yes this is the same, and sometimes people also refer to it as Sticky Blood, welcome by the way. MaryF x

[Manofmendip]

Hi there.

Yes, welcome and, as my colleague Mary says the two are the same.

Dave

[MJPrachyl in reply to Manofmendip]

I live in the States and when I asked my Hematologist if it was the same he said no. I figure he has just never heard about it so he said no.

[MJPrachyl in reply to MJPrachyl]

Do either of you know anyone in the states who have APS?

[CanaryDiamond10 in reply to MJPrachyl]

Hi MJ: I live in Illinois and have APS. It's just a matter of symantics. You are on Professor Hughes Website and so his extremely loyal following would like to see the disease named after him. Unfortunately, the rest of the world acknowledges APS and APl(Sorry can't remember the other initials) and generally speaking, in American you have to say the whole thing "Antiphospholipid Antibody Syndrome. They have minor recognition of the names sticky blood or Hughes, particularly in the younger doctors. There are no real "specialists" here. Each rheumatologist is supposed to be able to deal with it in conjunction with hematology and the other doctors working on the patient, depending on the co-diagnoses and how the APS affects that person.

Good luck on your journey. Hope this helps. It's a frustrating road here as you frequently need to educate the doctors.

Warm wishes,

CanaryDiamond10

[MJPrachyl in reply to CanaryDiamond10]

Hi Canary! Thank you for your response! How long have you had APS? I was just diagnosed last September during my 37th week of pregnancy.

[CanaryDiamond10 in reply to MJPrachyl]

Hi MJ: I'm so sorry. I was leaving for an MD appointment and shot off a quick and incomplete answer. I had my bladder cancer check today (negative YIPPEE). MaryF gave a much better and useful answer. She gave you the pathway to the American APSaction.org. I keep my eye on both of them, but prefer the UK forum. Maybe because it is actually an international forum. It doesn't know it yet, but it is international in the sense many people from many countries congregate on that site for companionship, comparisons, information. Maybe that's why I prefer it.

I believe I have had APS all my life. I don't know how I had 2 healthy children (emergency c-section) being undiagnosed and receiving no APS treatment. I had thrombophlebitis with my first. He was a bonifide 10 month baby born with "Little Old Man's Sydrome" and was an RH baby (got his Dad's blood after birth). He was the ugliest baby on the floor. Really, truth is truth. He looked like a little snake shedding his skin. Like he was in the bathtub too long. He is now a very handsome, 33 year old engineer praying for a baby of his own. My daughter was a repeat C-section. We took her early so her father could be there for the birth, she as ready and we were not taking chances.

You are at the best part of your life. Tell me how this disease has affected you. How did you come by your diganosis?

Canary

[CanaryDiamond10 in reply to CanaryDiamond10]

If you would prefer, feel free to use the personal message feature of this site. I know I can get pretty long because I type as fast as I think. I use it when I don't want the WHOLE world

to know what I'm saying.

[MaryF Administrator in reply to MJPrachyl]

Hi - plenty of people are on this forum who live in the USA, and you may like to look at the charity website: hughes-syndrome.org/ Which contains lots of useful information and is regularly updated with new information and articles. Also you will find that there is a real peer network on here somebody will let you know about the various medical staff they use in the USA, and there is also this: apsaction.org/

MaryFx

[MaryF Administrator in reply to MJPrachyl]

Ps Professor Hughes is of course a great supporter of the charity which bears his name and of this useful patient forum, but this is not quite his website, although we always do keep him updated with fine detail. MaryF x

[GinaD in reply to MJPrachyl]

Im here in West Virginia and had the usual autoimmune diagnosis delay. My pregnancies went fine, but I began to have migraine head aches which became worse and worse as they morphed into TIAs/ mini strokes. I have been on warfarin for 13 years now and have done quite well. I see a hematologist twice a year, and a rheumatologist once a year. I spend most of my online time on this site but also visit the US Antiphospholipid site as well. (Warning! biker sex trolls stalk the US site!).

[TJSTICKYBLOOD]

I'm glad to see that you have your answer and I echo what the others have said Antiphospholipid syndrome is the same as hughes and sticky blood

[analaishiana]

I was at St Thomas the other day as I am 14 weeks pregnant and apparently the two are not quite the same. To have the syndrome you would have needed to have one of three things. Three consecutive miscarriages. Dvt or Stoke. Our low birth weight babies. As I had nothad either of these I was told I had antiphospholipid antibodies but not the syndrome. I take aspirin daily and my blood tests were level 11. Normal is up to 7.

[Salty in reply to analaishiana]

Analaishiana, Your comment is really not correct. It comes from the Sapporo criteria for "definite" APS which requires medium to high titter antibodies on more than one occasion at least twelve weeks apart AND specific pregnancy morbidity or arterial or venous thrombosis. Those criteria, however, were designed for rigorous clinical research studies and NOT for everyday clinical practice and NOT for diagnosis. You do need to have clinical manifestations AND at least one antibody, but the clinical manifestations can include any of a number of non-thrombotic manifestations, eg headache, memory loss, etc, etc. Of course there is also seronegative APS.

[MaryF Administrator in reply to Salty]

Thank you for your clear clarification. MaryF x

[analaishiana]

Re read the question and yes Hughes is the same. But having antiphospholipid antibodies is not the same as having antiphospholipid syndrome

[Dagen]

Hi MJPrachyl,

I'm in the states too. In the DC metro area. Where are you from? My experience with doctors and APS has been alarming. I find that most of them have no idea what the disorder is and furthermore don't understand the correlating symptoms.

[MJPrachyl in reply to Dagen]

Hi Dagen, yeah it is scary how Doctors here in the US have no clue of the symptoms. I live in Texas.

[Julieanne]

Yes it is. I think the Hughes comes from the person who found what the condition was, the real medical term for it is

Antiphospholipid but those who are in the medical profession will know it as either.

[Want2BNormal]

The best APS specialist/Rhematology I've seen was Dr. Petri at Johns Hopkins Lupus Center in Baltimore Maryland.

[MJPrachyl in reply to Want2BNormal]

How did you find your doctor?

[jetjetjet]

Hi MJ -- i live in N.H.- and it seems we have them ALL - it can get confusing 00 even more when you are trying to train your Dc's -it's a work in progress.lot's of great advise and info here[ not from me i am an outcast ] hay- learn what you can print out info-take to your Dc's there are some good Dc;s here but you have to seek them out . Don't be afraid to walk away from Dc;s that are full of Horse S___..Listen to me I'll get you on trouble HA HA just kidding . did you mention where you are or am i so tired that i missed it -- jet [ FLIPPER ]

[Want2BNormal]

I was lucky in that a hematologist took interest in an odd case in the ICU. He was very eager to put me in touch with someone who knew about the rarity of APS (10 years ago) more than him. I find the best doctors are those that are A) Very much interested in your history and medical records and B) Willing to admit their limited knowledge in order to refer you to someone who knows the disorder. One of the best Pulmonologists was the doctor who said to me that he knew I was going to go home and Google some of the things he mentions so he turned the computer and we looked together while he showed me which sites he would accept as valid resources. These doctors tend to be younger, still curious and want to make a difference instead of just a dollar.