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After some info,please.

Boleyn Hammer Message
3 Nov 2017, 09:42 PM

Hi guys.

So,it's been roughly 3 years since my attack,it was a massive attack,but have since had no further attacks (to my knowledge). I am on an IVIG four weekly infusion which,evidently, seems to be working.

I hear a lot on here about frequent attacks, could you possibly tell me what these involve? And how you know you're having them? 

I ask mostly because I have set up a Facebook page to try and help others with the same condition and find myself a little underarmed to deal with some questions. I always direct them here,which, for me was a huge help. However it seems some lack the confidence or tech ability to approach this site. I apologise for my lack of knowledge, but endeavour to learn more.

Also, I have been approached by someone out of Montreal, Canada who is keen to hear from people with this condition.

Thankyou for any help you can give.

Ali the best.


Lolaudesi Message
5 Nov 2017, 05:00 PM

Hello, what's the name of Facebook page?

Boleyn Hammer Message
27 Nov 2017, 06:51 PM

Hi,sorry for the late response. It is simply - Systemic Capillary Leak Syndrome aka Clarkson's Syndrome