A round up of articles from UK press - Hughes Syndrome A...

Hughes Syndrome APS Forum

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A round up of articles from UK press

MaryF profile image
MaryFAdministrator
22 Replies

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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MaryF
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Lure2 profile image
Lure2

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

MaryF profile image
MaryFAdministrator in reply to Lure2

Great, thank you. MaryF

lloydyuk profile image
lloydyuk

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

MaryF profile image
MaryFAdministrator in reply to lloydyuk

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

lloydyuk profile image
lloydyuk in reply to MaryF

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..

MaryF profile image
MaryFAdministrator in reply to lloydyuk

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

in reply to MaryF

Thanks as ever Mary - you are a star :)

in reply to lloydyuk

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

beckyb profile image
beckyb

Great have shared the daily express one on facebook

MaryF profile image
MaryFAdministrator in reply to beckyb

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

MaryF profile image
MaryFAdministrator

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

MaryF profile image
MaryFAdministrator

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

Lure2 profile image
Lure2

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. .

lloydyuk profile image
lloydyuk

Brilliant spot on!

MaryF profile image
MaryFAdministrator in reply to lloydyuk

Good! MaryF

lloydyuk profile image
lloydyuk

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

Lure2 profile image
Lure2

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

Suzypawz profile image
Suzypawz

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

MaryF profile image
MaryFAdministrator in reply to Suzypawz

Great stuff! MaryF x

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

MaryF profile image
MaryFAdministrator

The Express one? MaryFx

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 :)

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