Here's the thing to make you smile....Barcelona !

Well I had a great week last week as you know, went to the Manchester conference , saw Beyonce, got a steroid jab, so feeeeeeling good!

Now got more good news, do u remember NRAS asking anyone wanting to be considered to go to Barcelona as a patient to talk to health care professionals.

Well I am honoured to say I was one of the ones to be selected. So I hope I do you all proud, I really want to put all the points across from everyone on here, on how RA affects our lives.

So I fly tomorrow, have to start speaking 08.30am!! The day after until 11 am ish then back on the plane.

So it's a fantastic opportunity for which I am grateful. I also hope it's warm , the forecast says showers though!! But the heat helps me !!

I am hoping that you will all be pleased for me and the girl does good!!

So what points about living with RA do you want me to get across to the health professionals?

Axx

12 Replies

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  • Hi Allanah

    Congratulations on such a fantastic opportunity and NRAS could not have picked anyone better!!!

    My point would be.... What is the long term outlook for someone newly diagnosed with RA? There has been a comment on here recently about people with RA not being able to work or a good majority having to give it up which quite frankly scares me as I'm not really for that financially or emotionally to be honest? If would good to find out about success rates in the drugs we take or about any new ones they might be developing?

    Good luck... You will do us proud I'm sure and enjoy Barcelona!:) x

  • Will do, don't forget to talk on the nras helpline though too, they r experts in helping with your worries or concerns xxxxxx

  • I will do and I will speak to my Consultant also, it will be good to hear it from other Health Professionals also! Thank you :) xxx

  • Thank you xx

  • the big thing to me is that the health professionals have a tendency to think that everything works much better that it seems to us. So they give us the drugs, and then feel pleased if blood tests and so on show improvement, so think that's alright then, big tick in the box marked "I have helped patient". But a bit better can still be totally rubbish for us, and they forget that all too often.

    But have a great time, and hope not too tiring! Well done you!

    Polly

  • Will bring that up, good point xx

  • Well done you. xxx

  • wow !!! congratulations Allanah, so pleased for you hun, you will be great, excellent choice on who to represent us hun, my point would be the awareness why is it that some GPs and practice nurses are not that well informed about the meds, mine didnt know what Enbrell was i had to educate them perhaps more awareness should be available for everyone about the meds given. you will do good girl i know you will !! best of luck and enjoy i know you will . hugs lena xx

  • Well done you !!!!!!!!!!! Think you will do a brill job.

    Think i would like to raise a point about tnf treatment. I have just failed on sulph and hydroxy. Have now started on mtx it was not first choice due to having had hepb. To be honest it has not gone well.

    I and others would love to be able to work for as long as possible. I also understand that tnf don't work for all. But why do we have to keep trying the normal dmard for so long when its obvious that dmard are not working? Is just cost of tnf or another reason xx

  • Li

    vng with fatigue.

    ATOS asessment criteria.

    So jealous..........

  • Wow. Fantastic. Love Barca, been there many times. Shame you are only in-talk-out though. Pity you couldnt stay an extra couple of days to do the sites. Meanwhile back to the talk. One thing I would like to say is to stay positive. When you are first diagnosed everyone gives worse case scenarios. Can I suggest that nurses should perhaps have more training in the pshycological effects on RA and how they should support patients with being more positive. Sure RA is life changing, but lets not be all doom and gloom.

  • Well done you, Allanah.

    I hope it is warm for you and the effort doesn't tire you out too much !

    It would be great to know why some of us have problems with energy levels that suddenly drop so low that we have no choice but to rest. What is the cause ?

    Have a great time, and it's great that you are representing us. "Go get em," Allanah :-) xxx

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