How can i

[rach1081985]

Is there anyway I can raise awareness of Hughes and tell my story

[MaryF Administrator]

Hi, if you decide to do anything in the media, which some have done, we can then probably put it on the charity website, it can be a bit daunting though using the media, think about it carefully first, Sometimes you can give talks via your local hospital, I know some have done that also, TJSTICKYBLOOD is busy doing that at the moment. MaryF

[rach1081985 in reply to MaryF]

Thank you for your advice Mary xx

[lupus-support1 Administrator]

You are very welcome to write a Blog at LUpus Patients Understanding & Support (LUPUS): the LuPUS Message Board.

You will have to register to access everything - to stop spammers, stalkers, bots etc

Everything is free. You can write as much as you like - a daily, weekly, monthly journal etc

Let me know if you are interested

[rach1081985 in reply to lupus-support1]

Thank you very much yes that woukd be great if you could help me

[lupus-support1 Administrator in reply to rach1081985]

Register at lupus-support.org.uk

For DOB: Please use the n-nn-nnnn format where = number

If your birthday is 4th April 1989: 04-04-1989

Make sure you use the "-" & not "/"!!!

Any problems, let me know.

You can the set up a Blog - you can ask for help if necessary.

There is a great deal of information at the LuPUS MB - it's free for everyone! It is more private - only registered users have access to forums. No spammers/stalkers/bots!

With good wishes,

Ros

[rach1081985 in reply to lupus-support1]

Thank u

[Kerlampert]

I would love to read it.

And I also enjoy videos on YouTube....

[Kerlampert]

I forgot to mention , you might like to check out heart-valve-surgery.com

For ideas on how to promote awareness of a health topic. Adam Pick is the founder, and he has done a great job if educating folks on this topic.

Kerstin

[rach1081985 in reply to Kerlampert]

Thank you

[TJSTICKYBLOOD]

Sorry for the late reply as I’m on holiday but I have messaged you about my expert patient work.

[rach1081985]

Thank you very much xx I did c xx