New Mission -- Raising Awareness of APS

My wife gets frustrated about the lack of understanding of APS among the many doctors she has seen. If only someone had explained to her early on how important keeping the blood thin, even with aspirin, she might've have suffered less.

So, has any patient embarked on a mission to raise awareness of APS among doctors and folks with health problems? (I thought there might be a clever phrase for this, APS Evangelism, perhaps, but that's not quite right because of the religious overtones.)

I think this would give my wife a Purpose. So instead of being a "patient / victim" she can be an "evangelist / warrior / something or other." Because she needs something to distract from the pain, fatigue, malaise besides just appointments with doctors.

29 Replies

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  • Hi there is ongoing awareness raising, some of us do it by getting involved with the media, and many on here, educate our various doctors and professionals by giving them Professor Graham Hughes' various books, and passing on the various blogs and videos and across the world awareness is being raised, we are flying the flag for Hughes SyndromeAPS. What I will say is watch this particular space! MaryF

  • Thank you. I saw your post in the "Related Posts" box after I posted mine:

    healthunlocked.com/hughes-s...

    Dr. Hughes' books are expensive and even when we bring them, the doctor typically looks for the endnotes with all the studies, which there are none, and then dismisses it. We're in USA, so we're at the mercy of the AMA. If there are no studies, it doesn't exist. I'll stop now before I rant. :)

  • I am sure we can help you find medical papers if that would help, there are plenty out there, keep well. MaryF

  • Yes we have loads on the different aspects and how they affect us. So if there is anything that you need just ask us. This is an aspect of this site that annoys me - that we cant load up papers and store them. But we are doing something about that! Be patient.

  • My daughter is a resident at a large city hospital. Unfortunately she was still at uni training when I finally got my diagnosis! However, since she has seen my long trail to diagnosis, she is aware that if she hears hoofbeats it could be zebras not horses!

  • I started a support group......it made sense to get together. I spend my whole time telling everyone I know about Hughes. You could also support Phil Godphrey's walk if you are in the uk with media coverage etc. It is a start. Good luck. Have you looked on the charity website? Any fundraising activity raises awareness.

  • I feel the same as your wife. I spend lots of time frustrated with Drs. I'm trying to raise awareness when and where I can.

    I have complained to Drs and sent them info. I try and tweet and Facebook links.

    I am also supporting Phil Godfrey on his walk. I am raising sponsorship and awareness by walking 10k with him and telling my story to local media.

    My end goal is to maybe write a book!

  • Hi I can totally understand the frustration have you seen Prof Hughes Dec Blog posted on her which she could print out and give to GP? It's useful to have in your purse so if ever she is at n appointment she could show someone. Maybe that could be put on a card. (same size as a credit card and laminated or have printed like business card. When I was with another group one of my friends did that and that charity has it available at a cost to its members. Could that be a project?

  • I'm interested in this? What is available and where from please? X

  • The Charity is for people with Overactive bladder and they now have a Can't 1ait card which describes what having a painful bladder is about. Maybe that is something Hughes Syndrome could do and as it's credit card size it's easy to carry around. And easy to read simple information.

  • That should read Wait not 1ait

  • That should read here not her

  • Oh right sorry I thought this was something already available for hughes x

  • I think everything we can do to raise awareness is beneficial. Even if we each educate one doctor. That doctor will talk to other medical professionals and if they share with one other they have doubled the awareness and so on...

    Encourage your wife to educate others;

    Why not use an acronym GAaPS (pronounced gaps)

    General Awareness (of) Antiphospholipid Syndrome

    GAaPS because we are trying to fill in the gaps in the understanding of aPS ??

    No religious connotation there! Lol 😝

    So what do you all think? GAaPS?

    Perhaps there is someone on here who could design a logo ?

    Some of us have been discussing a patient booklet that we could keep that would also educate medical professionals. Maybe we could use the name GAaPS and an inspirational logo 👍🏽

  • We are already in the process of doing this. I have already said we have some exciting projects in process.

  • And I should add we always officially refer to the condition as Hughes Syndrome NOT APS as that's the name the condition was called in honour of the Dr who did so much work to discover the disease! This eponym thing is ridiculous, is Graves or Parkinson's ever going to be renamed!

  • Agreed, and yes our projects are exciting, watch this space etc. MaryF

  • It would certainly keep things less confusing.

  • There are downloads on the website of APS Foundation of America. But the brochures are so terribly wordy and inconclusive. Same with the Lupus brochures.

    apsfa.org/downloads.htm

  • Yes, Hughes syndrome it shall forever be. How ridiculous to even try to say , " Anti Phospholipid Lipid Syndrome." So lengthy and cumbersome! Much less the dishonor to Professor Hughes, which is by far more important. To imagine, how our world will change because of the children he has enabled women to bear both through Lupus and APS management.

    I saw my GP yesterday. He is handeling my hematology until his referral to a new one is in place, etc. With a massive increase in Coumadin ( now 15 mg 4 times a week and 10 mg the other 3 days) I remain sub therapeutic at 2.2 INR so I told him ," yes. This explains the two migraines this week."

    He told me migraines we not associated with APS. The previous week he told me APS parients were not difficult to anti coagulate. He was holding my clinic letter from London BRIDGE hospital in hand bullet pointing symptoms stating the contrary!

    So sad we all have similar stories.

    We are in dire trouble here in the USA!!!!!

  • I think there has to be double blind studies that show that many of the people who don't fit into the Sapporo criteria, get better with anti-coagulation. Unfortunately, all the studies I know of use the Sapporo criteria. Most of the doctors in the US, even the specialists, are simply disregarding Dr. Hughes' many years of treating patients, and all the material he has written about it. In the US, they most have to have double blind studies to rely on. Some rheumatologists will use trials of meds, but most look at blood tests and only marginally at history.

  • As far as I know the Sapporo criteria was written in the absence of Prof Hughes and you have to wonder if that would have happened had he attended. In affect what that criteria says and what the Dr's are doing that follow it to the letter, especially in the USA is wait for someone to clot before they will treat them! I ask you is that good medicine? I certainly don't want to be treated by those Dr's.

    There seems to be a group of Dr's who are out to "change" the general thinking and as you say disregard Prof Hughes teachings but he's been around a long time and seen many patients and his experience is second to none. I'm not sure what they will prove other than to have a lot of ill and unhappy patients! All you can do is find someone you are comfortable with and who is prepared to fight your corner with you in it! Unfortunately politics is everywhere even in medicine.

  • Indeed!

  • Is that the missing link ? Sapporo criteria? I now have a name. My neurologist had emailed me a table of criteria in grids of symptoms of importance for inclusion. I have the entire congress section actually. I just didn't know the name, "Sapporo criteria ". It where the division of thinking began, as far as I can tell. I now say " The Hughes Gold Standard."

  • I believe the Sapporo criteria were updated a few years later with the new one being the Sydney criteria (sapporo 1999, sydney circa 2005?). The Sydney seems to have a lot more stuff around non-clotting clinical events (livedo etc.) but those are in additional sections, usually what you see quoted is the effectively the first section of the Sydney criteria which is much the same as Sapporo (some differences on lab tests).

    Prof Hughes must have been absent from not just Sapporo but Sydney as well, meaning an absence of several years from international events for his own named disease, which seems very very odd. Not sure what happened, but as you say it will be politics not medicine.

  • Your right Ray I got that wrong. It was Sydney he was absent from. But they have had other meetings since (every 3 years) and done tweeks. Trouble is some people will only use or quote from the one they chose to because it suits them or plain ignorance! And then there are others who just make up their own as they go along lol!

  • Here is the Sydney Classification for those that want to read it:

    onlinelibrary.wiley.com/doi...

  • Thank you

  • And if you want a technical read you might find the latter part of this interesting. I always also look at the references on these papers too as you can pick up additional good information.

    ncbi.nlm.nih.gov/pmc/articl...

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