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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Protecting L-W-O's Future

Author:  Gaynor Leech, Founder of L-W-O


It is no secret that this year 2019 I have become increasingly dissatisfied with all the changes on Facebook.  While some of the changes have been for the better the majority have slowed us down.  This was the year Facebook informed us they were switching their focus to groups and I for one have felt that some of the changes have hindered us more than helped us.  However, I will state we are not leaving Facebook, I am consolidating what we do and protecting L-W-O’s future.

For a long time, I have looked at starting a community on HealthUnlocked, I did look when we first started in 2013 but each time, I looked, I came away thinking the time wasn’t right.  I now feel that we have enough support and followers to at least give this forum a try.  The forum has very good features and I can link it more easily to our website and even in these early day’s web traffic has gone up.

The big difference as far as I can see is that with Facebook you join a closed group, but to do that you have to already have a Facebook account and you use your name and profile picture.  For anyone who doesn’t want to join Facebook, can now  join our Community through HealthUnlocked.   

Facebook groups are produced on the back of the Admins personal account which means that if the Admin dies or gives up the group unless they have passed it over to someone else the group dies with them.  Although there is a feature on Facebook to leave your account to a trusted friend or relative there are no guarantees the group will continue.  I have worked too hard to let this happen.

HealthUnlocked is an open searchable forum, however on this if you wish to remain anonymous you can use an Avatar, as Admin, I can see a few details, but I don’t even have your email address.  This means it is more secure.  For me personally it also means I am not holding information that breaks any GDPR rules.

On Facebook the support is faceless, and you are very lucky if they respond to complaints or queries.  On HealthUnlocked I have been assigned a Partnership Manager which means I have someone I can talk to; I can have video conferencing meetings, put simply I have support if things don’t work out.

Benefits of HealthUnlocked


  • Clearly Assigned Topics
  • Less cluttered interface
  • Admin support for the Administrators/Volunteers
  • I can assign badges to team members
  • Easy links to website and our other social media
  • Donate button which saves you going via the website – goes direct to PayPal


I would like to take this opportunity of welcome Lesley Smith to our Admin group, Lesley who is from Ireland has agreed to help me administer HU.  In addition, I would like to thank Pernille Henriksen for starting posts and pointing out a couple of gremlins which have been addressed.  I would also like to thank Fiona Stevenson who is an ardent disability/accessibility campaigner who has been advising me on these issues.  Fi has agreed to continue to do so and has already joined HU.  Importantly we all live with Lymphoedema.

A special thank you to Maddie Yorke from HU who has patiently guided me through the process and will continue to support us as our Partnership Manager.

There have been a few teething problems, but I am thrilled to say we are now up and running and you will find us at:




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