L-W-O Community

For families whose children live with Paediatric and Primary Lymphoedema

L-W-O Children's Support Group

I was approached by several members of our adult group during 2016 to start a children's support group which was launched via Facebook in January 2017.  We currently have 92 members.  In that number we have five passionate patient advocates from the UK, Europe and America, in addition our nurse Advisor Gail Close and one other Health Care Professional on board. Admins are myself, Marie Barber and Gail Close.  This is what one of our parents had to say when encouraging two families to join:

"This group is great for children. I have lymphoedema, and my daughter does but I find the age difference changes the next treatment. A welcoming group".

Our families are dealing with a wide range of lymphatic malformations and in the course of time I hope we will be able to tell our readers their stories an provide more information.

LSN Good resource

I would strongly advise parents to contact the Lymphoedema Support Network (LSN) who also provide free membership to all children and young people under the age of 18 living in the UK. They produce age-specific packs that contain activity sheets, information for schools and clubs, answers to frequently asked questions and more. If you would like to receive free membership for your child then please contact the LSN office on 020 7351 4480 lots more information on their website. You can also download the following two fact sheets:

Early Childhood Lymphoedema

Teenage Lymphoedema

The LSN website also has details of The Charter of Care for Children and Young People, various diagnostic tools and assessment pathways and paediatric Investigation tool for primary lymphoedema.  In addition you will also find a Map of Paediatric Clinics in the UK and a Register of Children's Clinics.

How Can I help my Child?

Paediatric & Primary Lymphoedema

I was very proud to be invited to join the European Advocacy Group in 2019 as a Patient Representative for Paediatric and Primary Lymphoedema (PPL)

Patient empowerment is about providing information and support to encourage patients and in the case of young children their families to become their own advocates.

This page was first published as part of the L-W-O Community  website January 2017

Republished on this website July 2020

If you are a family whose child is living with Paediatric or Primary Lymphoedema please come and join us:  

When you request to join our support group you will be required to answer three simple questions:

  • Does your child have/lymphoedema or a condition relating to the Lymphatic System?
  • Are you a Health Care Professional working in the Lymphoedema Community?
  • By joining L-W-O you agree to our terms and conditions & acknowledge our Medical Disclaimer. You understand any form of self-promotion will result in a member being removed.

These security questions are there for existing members and new members safety.  If you do not answer the security questions your request will be denied, I will hold unanswered requests for 48 hours before declining.

Health Care Professionals are welcome but please state that you work in the Lymphoedema Community.