Insertion in APS ACTION

[BrazilianBade]

Hey guys, long time no see.. I must share this with you. My doctor made me the first Brazilian patient to be included in the APS ACTION programme. I was thrilled when he told me because I will help doctors to find out more about how the APS affects our body. Is there anyone out there that is also in this program?

[CanaryDiamond10]

I'd be interested to find out more of APS ACTION. Who is heading up the programme? Is there a teaching hospital behind it? What sort of doctors are participating? Is it international?

Oh.... tell please! I'm so excited that there may be an organized effort of educated professionals trying to explore this disease. It would be wonderful.

Canary

[Hidden]

Congrats! I always dreamed of this happening and now it is!

Is Roger Levy your doctor? He is incredible!

[BrazilianBade in reply to Hidden]

Thanks. Roger levy is my doctor and indeed he is incredible. Wasn't so fond of him when we first met, but as time went by, I realized he was great and a brilliant professional.

[Hidden in reply to BrazilianBade]

I will be in Rio next September for the APS Congress (2013) and I hope to meet you and other patients!! I need to learn some Portugese!

[BrazilianBade in reply to Hidden]

That's awesome. I am going too. I can teach you Portuguese if you want.

[Hidden in reply to BrazilianBade]

Yes, I will need it!! Hoping to spend a couple weeks there and would be incredibly helpful to me!

[Hidden]

apsaction.org/

[TJSTICKYBLOOD]

Woohoo anyone working towards a cure gets my admiration.

[MaryF Administrator]

This is great news, read through the information a few months back and in fact it helped me track down a consultant for somebody in another country. Really very pleased for you. Mary F x

[Hidden]

Great News BB Please keep us informed of what the trials are - I presume your with Dr Levy?

This international collaboration is just what we needed - thanks to the very generous private donor who is making this possible, we may really start to get answers. I have been in touch with Erkan Doruk from the HSS in America and he has been really helpful and we will be sharing statistics in the future. At last!

[TreyBon64]

Oh this is brilliant news !!! After the day I've had I'm so thrilled that you are part of an action programme to help beat this flipping pain of a syndrome.

I'd be very interested to see and hear what the out come of it is and I send lots of good wishes and luck that there is a brilliant outcome xxxx Trey xxxx

[SueLovett]

This is very good news.

Really good that you are taking part in it.

Is the donor the one mentioned at the Patient's Conference, by Prof. Khamashta, Kate?

[BrazilianBade]

I honestly don't know what the outcome will be. The only thing that I know so far is that they need a sample of my blood (around 10ml) and will storage it for 15 years. They will test enzymes and proteins... I will certainly share with you the info he might give me.

As people said, this action is something to celebrate