Chair, Canada Chapter
Based in Canada’s Capital, Ottawa, Stephen (Steve) strongly believes that one gets from life what one ‘negotiates’; not, unfortunately, what one necessarily ‘deserves’. As one who has lived with primary (hereditary) lymphedema (LE) for 30+ years, his passion for the cause has been fueled by necessity: qualified, informed and competent specialized medical expertise assessed that his state of LE could prematurely end his life, if left untreated. Plus, among the voices of Lymphedema Community advocates…the “lioness’ share” is female. Steve, using his alter-ego – Canada MALE (Male Advocate for LymphEdema) – aspires to add the oft-overlooked male voice and perspective associated with this non-discriminatory disease. As the Community is inclusive, so should be its voice, plus…any & all advocacy!
Steve has considerable first-hand experience living with LE. Time, effort and overall personal investment in his own LE-related care has taken him across several countries to seek out proper, appropriate, and complete case-specific care. That journey of personal health continues, along with his passionate advocacy efforts. The journey has also been one of learning and fighting for LE’s cause on the public health agenda. His view is that successful advocacy efforts must also be “active”... not (apologetically) passive. Life experience has taught him that although Canada is the home of universal health-care, the level of care is not-so-universal for those living with LE...often because LE is almost ‘universally unknown’ within society. At its core, this realization puts him in pursuit of appropriate LE care, which is inclusive – primary in addition to secondary; and, male in addition to female…and for those with LE at any age!
Steve’s advocacy, outreach and awareness efforts have ranged from local to global in support of, most recently, three central goals:
1) “World Lymphedema Day (WLD)” – initially proclaimed in Ottawa in 2016, with renewal in 2017;
2) global “standardization” of terminology (“LE”); and,
3) spotlighted recognition of “World Health Day – Lymphedema (WLD-LE)” …hopefully in 2018!
Maybe in the coming year, we can celebrate the 70th anniversary of the World Health Organization (WHO) on its day, OUR DAY, along with 20th anniversary celebrations of LE&RN!
Steve’s conviction is that those living with LE should expect and receive the hope, help, support and care they need for a modicum of a quality of life. His focus is on quality – of life, of care, and of LIVING…not purely existing! He looks forward to this mission of heading up LE&RN: Canada Chapter.