New HSF website

We are pleased to launch our new HSF website and hope that all of you find it really helpful. Thanks to everyone who made it happen. Please clear your browser cache if you are still viewing the old version.

hughes-syndrome.org

[dangermum]

Thank you, a wonderful website.

[StevePT]

Excellent!Only one minor gripe.The dates showing are in U.S. format.Any reason why they could not be in UK format?

[Hidden]

I think you mean on the Blog Steve? Yes, I will look into it as it annoyed me too - to be honest, we were working on it til the wee hours for the three weeks so there is still a bit of work to do. It had to go live yesterday due to the deadline set by the national lottery.

However, it's created a great buzz and has reached over 1500 people on Facebook. So far the most popular areas are the symptoms (naturally!) and the Factsheets and APS specialists in the UK, closely followed by INR and self testing then travel advice

[StevePT in reply to Hidden]

In fact it is on the Latest News Section Kate.

A great job well done!

[MaryF Administrator in reply to Hidden]

I have certainly seen it flying around the net, and some of my medical journalist friends intend to tweet it for me. Mary F x

[MaryF Administrator]

One thing, I can't find the medical study papers from before, and of course it is so very important the the papers written on Seronegativity exist on this site, as so many of us have problems with that, myself included. Other than this an excellent site. Mary F x

[MaryF Administrator in reply to MaryF]

And for people who need the relevant papers please do ask; ie: jautoimdis.com/content/6/1/3

Mary F

[Hidden]

Have you looked in Hughes in the News Mary? All pivotal articles are there. We can't link to all research articles as the body of evidence about APS is increasing rapidly, so encourage people to search on PubMed

[MaryF Administrator in reply to Hidden]

Thanks as you know I regularly find articles and load them up on here or send them to people. However it worries me greatly to see nothing on our site about this, seeing as it affects so many, myself included. My wider family with this, my children etc, and my documented blood clots with first pregnancy and all managed on fragmin. Also those who stay stubbornly negative and go on to have serious episodes, only later to pass test, or indeed those who do pass initially only to become negative again. Of course I encourage people to search. My worry lies in the one size fits all approach of the NHS. The Thyroid community is successfully fighting back currently about inadequate tests. Also to have had clearly Lupus for so many year, my child also... and at age 47 only to have just passed a test. I commend you for the site, looks great, but this area worries me. I shall continue to pass the story of Professor Hughes' identical twins, both with Hughes, one who has always passed tests, and the other who fails... plus the jointly written papers on the subject. I don't want people to be left feeling like 'Cinderalla'... although today I am more like one of the ugly sisters! Mary F x

[Hidden in reply to MaryF]

Please do feel free to guide people to articles you find useful There are so many now that it would be impossible to list them all - to be honest, on the old site, I hadn't updated them since 2008 but you can have the old file if you like? It's good news because the bigger the body of evidence about APS, the more chance that we will have NICE guidelines one day x

[Hidden in reply to MaryF]

Please keep me in the loop as I will post on my blog any relevant information. I can't always keep up with searches and I am aware there are several new journal articles I haven't had time to pull and read up on yet.

My most recent experiences with docs here in the USA is testament that any publicity is desperately needed as well as way to get the word out and disseminate info to both patients and doctors.

I noticed the other day on Uptodate.com (which is a main source for many docs here in USA) in the part about APS it says APS causes no symptoms and gives some inaccurate info. I think we need to start chasing this down and getting proper info there. Just the need for this is motivating me to work hard to get better so I have the time and energy to do this.

[Hidden]

Thanks Steve - I will look into that area too

[Hidden]

Hi Lynn

I'm afraid that the tag line is extremely important from an SEO point of view. We can hardly say "the HSF ... for people without antiphospholipid antibodies"!

Seronegative APS is definitely controversial and I am not sure where the "25%" figure has come from - please can you verify that from a reputable source and one that is not anecdotal? Most people will be positive for one of the tests which is why I highlighted the anti-beta2-glycoprotein1 so more labs will start testing for that too.

Please see my note to Mary above regarding the research articles - to reiterate, I hadn't updated them since 2008 so they were already five years out of date, but you are very welcome to have the old file, just let me know

[Hidden]

Oh Lynn - sorry I just noticed your comment about no research papers. You will find links to all the most pivotal papers released on APS in the recent years on the link you were discussing. Hope this helps!

[MaryF Administrator]

Very useful clarification, thank you. Mary F x

[SassyOne]

Great layout! Very useful. I love the features like the heparin injection guide. I would love to see more information on the many issues that Hughes can cause such as the complications in pregnancy. Thank you for sharing!

[Hidden in reply to SassyOne]

Thank you! Please do suggest any sections you would like to see added

[dutchess in reply to Hidden]

loving the new website x

[Hidden in reply to dutchess]

Glad you're finding it useful Kx

[Hidden]

Thanks Lynn. We clearly need to think about having a section on sero-negative APS on the site. Perhaps you could mention this to Graham when you next see him?

[MaryF Administrator in reply to Hidden]

I shall be doing the same. Mary F x