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Contacting Australian SCLS Volunteers for Research

HLOD Message
27 Nov 2018, 02:16 AM

We are seeking volunteers with SCLS and MGUS to participate in research into Clarkson's Syndrome at Royal Perth Hospital.

The research will investigate the contribution of the MGUS paraprotein (if any) to capillary leak episodes in adults.

Participation would involve giving a blood sample which we would organise via your own doctor.   

For the purposes of this research,  a blood sample taken prior to commencing IVIG treatment would be most useful.

Please get in touch via rareshare if interested in possibly participating in our study,  or for more information.



Dzmitry Message
27 Nov 2018, 04:01 AM

Hi Helen

I am writing you on behalf of my friend Maryna Vasilkova, she was diagnosed with SCLS. She leaves in Belarus, Eastern Europe. She would like to participate in your research. She would also like to know if the treatment  in your hospital would be an option for her. You can contact me at 

Thank you a lot

Dzmitry Maskaleu

WazzaACT Message
30 Nov 2018, 05:38 AM

Hi Helen

I live in Canberra and have been diagnosed with SCLS. I have been treated at Canberra hospital very successfully for 7 years with IVIG. Canberra Hospital and I were instrumental in having IVIG approved in Australia for the treatment of SCLS. My case was the subject of a published medical paper and Canberra Hospital Dr's have worked with NIH in Washington, DC supplying my blood samples etc as part of ongoing research. 

I would be very happy to support any further research work being undertaken but could you explain a little more about what you are doing, are you workng with NIH or other hospitals etc.




WazzaACT Message
30 Nov 2018, 05:39 AM

To be clear I also have MGUS.

Jcarson Message
2 Dec 2018, 08:11 AM

Hello Helen

all in favour,


HLOD Message
23 Jan 2019, 05:12 AM

Warren,   have you received my reply (sent via the Message tab)?    Helen