Lets not forget about this very helpf... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Lets not forget about this very helpful petition started Re: Hughes Syndrome

MaryF
MaryFAdministrator

Petitions like this one, can take off if people sign and and remember to pass them on via email and social networking sites for more signatures:

Let's give it a leg up!

epetitions.direct.gov.uk/pe...

Mary F x

17 Replies
oldestnewest

Wish I could of signed this!!!

MaryF
MaryFAdministrator in reply to 77tiger05

Well, thanks for sending it positive thoughts x

I have just signed the petition, but when I checked back the number of signatures had not increased. Will check again later.

MaryF
MaryFAdministrator in reply to Glitterwitch

Make sure you check your email... as you have to sign a confirmation link in return email from them to make your signature live. Mary F

I have just signed this and passed it on. I will also pass it on to my MP to see if I can get their support.

MaryF
MaryFAdministrator in reply to MrsBL

Great, petitions only work if people actively pass them on to as many as possible. Mary F x

You could also consider sending the film from our patients day, if they wish to watch something valid!

I had done the confirmation link for the petition, just checked back and the number has gone up - so hopefully I was included.

MaryF
MaryFAdministrator in reply to Glitterwitch

Yes it will be, thanks for being so proactive xx M

Where do I get the film from patients day please? Sorry I am new here, only joined yesterday.

MaryF
MaryFAdministrator in reply to MrsBL

Aha what a naughty ADMIN I am, hello and welcome and here you are! Sorry I had not realized... good on you for being so on the ball, which is more than I can say for myself: youtube.com/watch?v=CFi9KpK...

Mary F

No need to apologise, I did not do an introduction post yet as it's just too much of a whirlwind after diagnosis. I have one burning question that you may be able to pint me in the right diection to have answered please. Do you know of anybody that has gone through having Rituximab as I am shortly due to sart this treatment and would really like to know more first.

Thank you for the video link I will certainly be passing this on and it is a shame that I did no find you in time to atend the patients day. I will certainly attend if you have another one

MaryF
MaryFAdministrator in reply to MrsBL

I personally do not, but keep asking that question, I think you have already, and somebody may also have done this! So will answer you in time! Sorry that I can't tell you about this, one, not a drug I have had! Mary F

I understand that it is rare to be given this drug as an application has to be made to the PCT by a Rheumatologist to make sure that the patient meets a very strict criteria. I am led to believe that this is due to the drug being so cost prohibitive. If it works then the more people who can access it the cheaper it will become. Let's see what happens and I will keep this updated.

Thank you again

Wish I could sign it..... am in States.... but am sending lots of energy your way. Wish we had something like that here!

MaryF
MaryFAdministrator in reply to Leigha

Start your own on change.org... then they can circulate the world.. and it won't matter who signs it! I would sign it xx MaryF

Done Mary, well done you. Dx

MaryF
MaryFAdministrator in reply to DorothyItaly

Well.. just a little re run, not the author of the petition! MaryF x

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