A round up of articles from UK press

1. The Daily Mail: dailymail.co.uk/health/arti...

2. The Telegraph: telegraph.co.uk/health/nhs/...

3. The Guardian: theguardian.com/society/201...

4. The Guardian: theguardian.com/healthcare-...

5. The Daily Express: express.co.uk/news/health/4...

6. AND another from The Daily Express on HUGHES SYNDROME: express.co.uk/life-style/he...

MaryF

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  • Hi Mary,

    Very interesting articles. I wish we had one as the last one about Hughes Syndrome in our Newpapers in Sweden. I would like to do something about it. It says you shall go to your GP about it. Hope the GP knows about the syndrome!? Or Contact this site.

    Thank you Mary. Kerstin

  • Great, thank you. MaryF

  • Nice one Mary information like this is priceless great see some of the national rags printing about APS.

    I was at the HSF patients day last week and thoroughly enjoyed it the speakers were amazing.......I realised a few sad things however sitting in the audience about a large proportion of other sufferers. More a reflection on society I guess.

    I even had my question read out which I was thrilled about (CAPS)

    Shame I didn't get to meet many of the administrators.....I couldn't work out who was who if I'm honest.

    I live in Bristol and understand there is a regional group of the HSF This way?

    Kind regards

    Danny

  • Hi Manofmendip (Dave) will fill you in on that one, re that group. So many people have written to us privately about not know who we were at HSF as in admins from the forum that I shall hold up flag next year, it is lovely that so many people sent us messages and nice words and indeed many members of the medical community, who came up to us and made a point of thanking us. All very much appreciated. I will also say that I appreciate being a member of this forum alongside being and Admin. A lovely bunch of people!

    Last year and the year before I actually wore a shirt with my online forum picture on it.. but due to being between houses with giant move currently, and also a delightful flare before the day... I was not prepared to spend any longer looking for it among the piles and pile and mountains of transient belongings!

    We do this work unpaid and of course as volunteers to help raise awareness, team players alongside the charity. and of course to help people who are in dire straits at times. It is by the way work I very much enjoy, and fits with my other work - I fit my role as Admin on here around the other things. It is good to see all the stuff the charity is doing currently and also the new venture for World Sticky Blood day. MaryF

  • DITTO DITTO DITTO ditto ditto........ :-D

  • So pleased you are better, I had literally everything crossed at once. MaryF x

  • Mary could you advise how I could become further involved as I'd love to give back if you know what I mean....thanks. My world is very different these days and dare I say.....better than the old one..

  • Well you could approach Kate at the HSF charity, as often patients go in their local papers or do local educational events in their area for say their local health authority or GP surgery, or write books at times, or indeed put on fund raising events... She can be contacted direct at the charity: kate.hindle@hughes-syndrome.org

    It will be appreciated by them and us I am sure. MaryF

  • Thanks as ever Mary - you are a star :)

  • Your question was very pertinent to everyone Danny - something we're all frightened of but you've been through. It simply HAD to be asked :) x

  • Great have shared the daily express one on facebook

  • Great, I missed it this morning when I went through the papers, perhaps they had not loaded it on... so I pinched it off the charity facebook page!! MaryF

  • Is it possible to post the whole article without having to go through the ads or sign up for anything?

  • The Express one? MaryFx

  • I spent the day at St Thomas Acute Car Unit on Tuesday with a suspected DVT. Thankfully all ok but then I think the fact that I injected myself with Heparin fairly soon after the symptoms started I really think helped. I have to say that from calling A&E at 1.30 am the nurse I spoke to there was excellent and knew all about APS and was able to advise me and told me when to come in. I was given the third degree when I did arrive - nothing over looked and even when the d-dimer was normal still sent for an ultra scan with a follow up in a week!

    What was even better was that while lying there waiting for results I was asked if I wanted to talk to some medical students.......well you know me never one to miss a chance to spread awareness about this condition. So of course I told them to usher them in! :-D

    We spent the next 45 minutes asking and answering lots of questions and I think I have two more interested medics now wanting to learn more about our condition for the future and even better understanding its links to other autoimmune conditions...priceless!

    AND...whilst there you get talking to other people, also hanging around, there was someone who also had a suspect DVT and could also have APS and had never heard of it before.

    Im rounding them up!! :-D

  • Great we can always rely on you to be an unsung hero... we all appreciate it. MaryF x

  • Hi APsnotFab,

    Have missed you. You ought to have more suspected DVTs. That would probably spread the knowledge of APS among the English medical students.

    Good that you are OK.

    Do you know what the difference is between Aspirin and baby-Aspirin? I asked in the Pharmacy here in Stockholm and she said that Aspirin was good for headaches and much stronger than our "Trombyl"(which I thougth was the same as baby-Aspirin as it is not so strong.) Trombyl is used as a first drug for not clotting. I used it myself.

    I read in the article in Express they say you should take Aspirin. But is this a treatment for not clotting? We have Trombyl on prescription and it is half as strong as Aspirin.

    Hope I could explain myself so you get what I mean. Could be useful for me to know when I am on this site together with you all.

    Kerstin. .

  • Hi Kerstin - Prof Hughes made a comment about Aspirin and its strengths at the Patients Day and if my memory serves me well I believe he said that 75mg, 80mg up to 150mg daily all were about the same for working well. I think that different manufacturers make a slightly different strength like 75 -80 etc and call them "baby" aspirin!

    We will have to wait for the transcript to get his exact wording but I think we get the gist of what he was saying!

  • That was what I thought. That makes sense.

    Interesting and important to hear the Professor Hughes himself before we make any conclusions

    Thank you for your answer. Kerstin

  • Brilliant spot on!

  • Good! MaryF

  • Whoops my reply joined your comment further down! Sorry glad you are well and fighting another round.

  • Blimey! That must have been scary for you - well done for raising awareness at a difficult time x

    Had bloods done this morning and the phlebotomist didn't know what clopidogrel was - quite shocked!

    Hope you're feeling better x

  • Actually it gave me a nice lay down when I should have been working and a good excuse to turn the D__ phone off! I think I would have laughed if the phlebotamist had said that to me but then we must remember they are just trained to stick needles in and draw blood out! As long as thats done without pain I think I will forgive them for not knowing a few things :-D

  • LOL - turning the D__ phone off is always good. I know what you mean about medical staff not knowing everything, but was quite surprised at that. Even more worrying was that they no longer have an anticoagulation unit at Winchester - they've shipped it to Basingstoke which must be impossible for a lot of the older patients. No doubt the hospital is pushing the care to the GPs - I wonder if this is happening across the country? Glad you're OK :)

  • Shared articles on my face book page too that supports Hughes :) x

  • Great stuff! MaryF x

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