Lymphoedema Action Alliance

Roberta beat me to it. I was rather surprised that as a member group, BCNA did not mention this at our Summit2015

Can I also add that it is Vital that we all add our names to the Lymphoedema Registry

www.lymphoedemaregistry.org.au

so that the LAA can advocate for medicare re graments and treatment. If we dont have accurate numbers of lymphoedema patients, we cant advocate for PUBLIC treatment or indeed where extra therapists should be located at either public or the more common private hospitals and therapy rooms.

please remind anyone you know with primary or secondary lymphoedema to ensure they are registered to ANZLoR. I know there are more than 600 odd across Australasia and surely BCNA membership has more that 200 of us with arm Lymphoedema secondary to breast Cancer! Help us spread the word of this fantastic resource launched the week or our NSW Lymphoedema Support Group Info Day last March 7th. ( sorry Info day prep, weddings etc prevented my publicising widely at the time)

Please spread the word in your communities.

thanks,

your Green (LO) and pink sister,

Carol

Done! i.e. went to the site and registered.  I have found it curiously and frustratingly hard to get support with my lymphoedema problem - the gp didn't want to know (or even take a look) and it took 3 visits to the clinic by the breast care nurse before doc would write a referral to a lympho practitioner.  Specialist has since done great things with massage and referral for compression garments, but it is sad that people have to wait 7 (seven) months after referral for an assessment appointment at the city hospital.  Much more needs to be done to make necessary treatment available, and to inform doctors of the condition's relevance.

Done also. Nice to meet Carol at the summit. Yes please all spread the word. 

Paula x