Trust me I'm a doctor follow up email - Awareness raised... ;)

[loppylou68]

I received this in response to emails sent last week

Trust Me, I'm a Doctor: Hughes Syndrome link

Alex Freeman <[e-mail]>

19:47 (14 hours ago)

to me, Mark, Jackie

Dear Miss Sherry,

Thank you very much for your email about Hughes Syndrome which has been passed on to me. Personally I had not heard about the condition before, and I read your site with interest.

The rules on links from BBC pages are quite strict, even concerning charities, however I agree that Hughes Syndrome would be of relevance to those searching for more information about DVTs. I found that the NHS had a very informative site about the syndrome, and have therefore asked our web team to add a link to that from our page.

I know that it may be disappointing not to have a direct link to your charity’s page, but hopefully the link to the NHS page will do the necessary job of alerting members of the public concerned about DVT to the existence of the syndrome - and from there they will be able to find support through your charity when they search further.

Thank you again for taking the time to contact us, and I hope you enjoy the rest of the series (our item on TIAs in Episode 3 may also be of relevance!)

Alex Freeman

(Ref: CAS-3393893-G1XJB8)

***************************

Dr Alexandra Freeman

BBC Science

Zone 3.30

40 Pacific Quay

Glasgow G51 1DA

Scotland

Tel: [phone]

BBC Internal: 07 361004

***************************

[loppylou68]

Brilliant!!!! check out the new useful link on the Trust me I'm a doctor page

bbc.in/1O72zHE

bbc.co.uk/programmes/articl...

[minnime63 in reply to loppylou68]

That is good news!

[MaryF Administrator]

Thank you for doing this, MaryF

[Manofmendip]

Well done, great work.

Dave

[Hidden]

You STAR!

Great work - really impressive and shows that you can make a difference. Thank you so much for doing this for us all.

The NHS Choices link is good too as the charity was involved in writing the pages, AND they linked up to this community

Is it OK if I put something on our Facebook page - thanking you of course Not sure what your name is though. You can email me directly if you'd rather not say in public: [e-mail].

[loppylou68]

Hi KateH

Thank the Heparin... treatment is finally paying off

My name is Louise Sherry and if it hadn't been for hughes-syndrome.org I wouldn't be getting any treatment. Its been a life saver for me.

I will continue to raise awareness as best I can but pleased I could make a little difference

L

[Hidden in reply to loppylou68]

Thanks Louise - always good to know that the charity is helping

As you know, I put it on Facebook and the post reached over 7.5K people. What with the change in the BBC Trust Me I'm A Doctor page and this, you're a one woman awareness campaign!

As Sue says, let's see whether they make the connection with the TIAs this time - hopefully!

Thanks again - brilliant effort x

[loppylou68]

Shocking isn't it.....

Well at least she's heard of it now. 😀

[SueLovett]

Well done thanks for taking the time to make this known. I jolly well hope that TIA's are linked as well.

Would appear the so called experts missed an important trick on these two subjects.

Sue

[daisyd]

Well done, thank you