ITV This Morning

[MaryF]

Hello

I had a very interesting telephone call this morning, which alerted me to the fact that ITV This Morning will feature a section with a patient, regarding Hughes Syndrome. Clearly after the programme has taken place I will load up the programme on here on ITV Catchup.

MaryF

[Tinythepanda]

Thanks for letting us know. I'll tune in this morning.

[Hidden]

Well done Mary - you've done a lot of groundwork with this and it's paid off

One of our trustees is recording it so we should have a link and time at some point.

Thank you!

[daisy82]

I just saw this piece and hadn't heard of the condition before. I am diagnosed with polycythaemia and fibromyalgia, but this sounds just like me. Think I need a chat with my haematologist!

[MaryF Administrator in reply to daisy82]

Your doctor or Haematologist can do these tests at the hospital, better there so the samples do not hang around for collection at GP surgery: hughes-syndrome.org/about-h...

We have a list of specialists on the charity website recommended due to their expertise: hughes-syndrome.org/self-he...

I suggest you have a look around the entire site as it does carry a lot of information.

Best wishes. MaryF

[daisy82]

Thankyou Mary, I'll have a good look around the site and post a couple of questions too.

Are we actually allowed to request a different haemotologist?

[MaryF Administrator in reply to daisy82]

A starting point is to go to your GP armed with all the information and extract the blood test forms, while you are at it get them to look at your iron, B12 D and also a Thyroid panel, then take the forms and queue up at the hospital, they can then take it from there, you can request perhaps a Rheumatologist, also your Haematologist may be up on this disease or be willing to be. Best of luck. MaryF

[Lesley61]

When was this on Mary just seen someone saying about it I'd like to watch it too x

[MaryF Administrator in reply to Lesley61]

Hi, I did put it up on another post, however here it is again, it was yesterday, scroll through the links down the page until you get to Dr Chris with a family, the disease is explained but of course as it was National Baby Loss Awareness Day the accent is on that. MaryF

itv.com/thismorning

[Lesley61 in reply to MaryF]

Thank just watch it now x