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Carol's avatar
Carol
Member
12 years ago

Lymphoedema booklet

After approx 2 years work by Northern Sydney Cancer Action Network CAN and Lymphoedema Support Group (LSG) of nSW, we have a booklet " Lymphoedema - untold stories" available on the lsg web page: www.lymphoedemasupport.com The booklet will be launched in Chatswood in sydney next month September 2013 by Professor Fran boyle who many of us have heard speak at BCNA events. Some of us also were filmed earlier this year at Mt Wilga hospital which got funds from the ALA therpists group to do a video called" survive & thrive Lymphoedema" a self management video filmed by someone who himself has lymphoedema. The video was launched in parliament house during the frantic iced tea month of March. Itnis available on the Ala page where one also goes to find a therapist www.lymphoedema.org.au

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  • Carol's avatar
    Carol
    Member
    12 years ago
    Thanks glad to hear youmlike the booklet.Agree Lymphoedema is so hard to deal with since affects our lives so much and ongoing expense. Some amazing insights from people who have primary inherited or secondary form of this chronic condition. We hope it helps those with lymphoedema and assists medical fraternity become aware of what it means and how to diagnose. In my case via bio impedience measure of lymph flow and measurements of my arm. If we can get the legislators to the party and get Medicare numbers for treatment and garments that would be helpful. More hospitals with fully trained therapists would help also. Interested to know how others diagnosed and whether they have private or public hospital treatment. Carol
  • Carol's avatar
    Carol
    Member
    12 years ago
    Thanks glad to hear youmlike the booklet.Agree Lymphoedema is so hard to deal with since affects our lives so much and ongoing expense. Some amazing insights from people who have primary inherited or secondary form of this chronic condition. We hope it helps those with lymphoedema and assists medical fraternity become aware of what it means and how to diagnose. In my case via bio impedience measure of lymph flow and measurements of my arm. If we can get the legislators to the party and get Medicare numbers for treatment and garments that would be helpful. More hospitals with fully trained therapists would help also. Interested to know how others diagnosed and whether they have private or public hospital treatment. Carol
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    Have just glanced at the booklet. It is so great. I know at times I have struggled more with my lymphedema than my breast cancer. Paula :)