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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Guest Blog Steve Kelland

Hi, Gaynor - good health greetings from Canada!

Written 5th June 2018: 

"Gaynor Leech - re: the wording used to describe lymphedema/lymphoedema, I suggest you might want to add "progressive" to its unwelcome 'attributes'. The more I monitor social media traffic involving the full range of LE-impacted individuals from neophyte (newbie) to those who are necessarily more experienced (living with LE, including time as un-/under-/mis-diagnosed afflictee), the more I see overlooked or unacknowledged, critically important aspects of LE:

1) it is a disease, not a condition or disorder;


2) it is chronic (so, not a case of 'getting better', as well-meaning people are wont to ask);


3) incurable (so far!) ... (fortunately, more researchers are becoming engaged & interested in the continuum of lymphatic diseases); & ...


4) progressive - while this word often seems positive, depending on context within social affairs, policies, regulations, etc....in this instance it is rather indicative of the persistent, resilient destructive nature of LE. In fact, it is precisely because of this fourth attribute that those of us living with LE must be forever vigilant & compliant with treatment & comprehensive management regimes. We must be 'up to the task'. There is no alternate option.... yet!  Which brings me to

 

5) where organisations such as yours are an invaluable resource in spreading hopefulness & helpfulness. In the tri-part path that many with LE seek out (inspiration, motivation & aspiration in 'progressive' order), you can add, amplify or echo that necessary "voice" of positivity. Ideally, as in your case, efforts move beyond passive awareness, into active pursuit of attention, recognition, care, support & change for the "LE Community". I refer to the "Lymphedema/Lymphoedema Community", which - since establishment of "World Lymphedema Day - 6 March 2016" - no longer recognizes national boundaries in its fight vs. this 'scourge'. We cannot afford any further subdivisions in this community-wide effort...this would only lead to (further) marginalization.
Good health (& good work!) –

Canada - MALE (Male Advocate for LymphEdema) | FB: Lymphedema - LE Nexus Canada
"Shrinking the Lymphoedema World while Strengthening the Lymphedema Community...upside & down under!"

Steve has been a member of L-W-O since 28th November 2016 and regularly contributes thoughts, comments and information which are valued by myself and our members.  We are very fortunate that L-W-O is not only in the UK but now truly has a global following.  You can follow Steve at Lymphedema - LE Nexus Canada

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