L-W-O Community

This website is for those families whose children have been diagnosed with Paediatric and Primary Lymphoedema.  When I first started my journey living with lymphoedema I could not have begun to imagine what it was like for a family whose child had paediatric or primary lymphoedema.  When I was first diagnosed with lymphoedema I did not even know it was ‘secondary’ lymphoedema and I certainly did not know there was a ‘Primary’ lymphoedema.  I only found out about primary lymphoedema when I set up the adult support group in 2014 and a lady joined the group whose family had lived with this condition for generations past and present.  Even when I set up the children’s support group at the request of parents, I had little understanding of what this must mean to their families. Then in late 2016 my great granddaughter was born with a lymphatic malformation (LM) identified as cystic hygroma (CH). That was when I really begun to understand the enormity of what families might face.

We know when a child is diagnosed with a lymphatic malformation that the parent/parents feel helpless and isolated. They often blame themselves and spend time worrying could they have done anything different through their pregnancy especially when there has been no family history. Then there are the families whose lymphoedema is hereditary. Our aim with our children's support group is to provide information, support and encourage families to become their own advocates.  This website will complement our children’s group and we will be able to provide more information and tell the stories of both the parents and the children. As our understanding of Paediatric and Primary Lymphoedema (PPL) develops we hope to give parents and guardians the tools to be able to manage and self-care for their children living with this condition.

 Lymphoedema can be managed and treated.

This family website will have some good tips and advice for coping with your child’s lymphoedema.  If you would like me to write about a topic I have not thought of please?  Send me an email.

CH - Cystic Hygroma

DO - Deep Oscillation

LM - Lymphatic Malformations

LE -  Lymphoedema

LS -  Lymphatic System

PPL - Paediatric and Primary Lymphoedema

MLD - Manual Lymphatic Drainage or Movement & Drainage

SLD - Simple Lymphatic Drainage or Self Lymphatic Drainage

This page first published July 2020

This is an ongoing Project