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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

No Expert?

I have many conversations with members of L-W-O, Community Groups and the Public about lymphoedema.  These conversations range from the curious, generally interested, indifferent and ignorance about the condition of lymphoedema.

Over the last six years I have developed quite a thick skin both figurately speaking and physically.  For those that don’t understand this, lymphoedema skin does thicken over time.  The person I was talking to suggested that because L-W-O doesn’t have any medical experts on board, we cannot accurately understand or advise those living with this condition.  Unfortunately, that day, being tired, I wasn’t very quick with answers to give a decent reply. 

Often my best thoughts come to me in the middle of the night, lying in bed, in the pitch dark when everything is still, processing the day’s events and conversations.  Then the answer came to me.  Yes, we do have experts on board, they might not be medically trained but we have our members those very patients who live with the condition of lymphoedema.  Our members who L-W-O encourages to become their own advocates, those members who are eager to share their journeys living with this condition.  They share amongst themselves what works and what doesn’t work in the self-management of lymphoedema.  Our members will often find articles or videos and share them with group.  This gives them the power to question their treatment or lack of it.

When you live with a chronic condition you are the one that often must teach your GP with regards to treatment, compression garments or the medication that will not help lymphoedema.  In addition, our members share, exercise tips, lifestyle changes, skin-care tips all leading to a vast knowledge of how to live with this debilitating condition.

L-W-O has always defined itself as a non-medical group.  There are more lymphoedema groups active through social media than ever, importantly these groups are finding each other and prepared to work and share information with each other.  The common bond we have living with this condition will enable us to raise the awareness of lymphoedema across the world.

Lymphoedema exists, we exist

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