Professor Graham Hughes' Blog - May 2018

[MaryF]

ghic.world/self-help/blog/m...

MaryF

[HollyHeski Administrator]

Hits home again!! We can all relate. Thank you for posting

[Frodo]

Questions arising from this for me: if you self-help BEFORE diagnosis to the point that your APS symptoms recede, is this going to impair correct diagnosis?

2nd question - does APS naturally have 'flares', times when it is more or less active as I've read other autoimmune conditions like Lupus do? Do the antibodies come and go and are the levels consistent with the severity of symptoms?

I ask because I still haven't seen a consultant (should be soon) and at the moment I'm finally experiencing some improvement due to my self-help methods - although still taking migraine meds several times a week.

[MaryF Administrator in reply to Frodo]

Yes, antibodies come and go, I am a great example of that myself, I also flare, but as I have so many diseases it is not always possible to work out which one is causing it, and the trigger points. I took Aspirin before diagnosis and it did not effect my outcome with Prof Hughes or anybody else for that matter. I hope you have a great appointment, and that it is with one of our recommended specialists. MaryF

[daisyd]

Hi Mary don’t know why but I can’t get on this

[MaryF Administrator in reply to daisyd]

Is the link not working with your device, it should lead you straight to the website, sorry for slow delay, I was at a very big funeral yesterday, and before that I was doing a gig on the beach, so not easy to access the internet in the various roles I have had at those. MaryF

[Tofino5]

Daisy d, try copying the address given, paste it into the browser, but be sure to remove the initial “\” at the start of the address. It’s right before the https. That will work.

[MaryF Administrator in reply to Tofino5]

Great advice. MaryF

[Wittycjt]

I even went to the GHIC website and can’t get it

[MaryF Administrator in reply to Wittycjt]

I have just re applied the link, let us hope it works better now. MaryF

[Wittycjt in reply to MaryF]

Thank you. It is working now

[AnnNY]

ghic.world/self-help/blog/m...

I thought I would try copying & pasting it again. Anyone can delete it if they get it working.

[AnnNY]

My link works for me.

[daisyd]

Thank you Mary for all the work you do on this site, really appreciate it thanks, will try again sorry for your loss

[MASuk10]

Any reason why Dr Hughes now has his own site when ***HSF*** was the original Hughes Syndrome site?

***Link Removed by Admin***

[MaryF Administrator in reply to MASuk10]

Hi, Prof Hughes used to be involved with that charity as did we as Administrators but now we have a new global charity, this is the only charity he is attached to, a great new venture. Plenty of room in the world for charities, and this one is global as well as for the UK. ghic.world/

MaryF

[lupus-support1 Administrator]

Thank you! I will repost in LUpus Patients Understanding & Support (LUPUS).

[bernieembleton]

I cannot access this.

[MaryF Administrator in reply to bernieembleton]

Any ideas Hidden MaryF

[MaryF Administrator in reply to bernieembleton]

Go directly to the website and have a look on there, if it is not working here at the moment. MaryF

[Wittycjt]

I went to the site and found it posted under “self help” at the top of the page. Thank you Mary, always enlightening...

[Jillymo]

Very interesting read that many of us are able to relate to.

What I love about professor Hughes documentation is the easy reading.

He writes in such a way that we can all understand.

What a wonderful dedicated man he is. ( What a lovely photo of him )

[Wittycjt in reply to Jillymo]

😘