L-W-O Community

For families whose children live with Paediatric and Primary Lymphoedema

Explaining Lymphoedema

Living with lymphoedema or having a lymphatic malformation in the family is not easy to explain.  One of the things I have been particularly interested in over the last seven years since starting L-W-O is breaking down the myths and simplifying the language we use to explain this condition.  There are two main types of lymphoedema Primary and Secondary and on this page we look at the difference in the two types, the importance of the lymphatic system, the parts of the body that are most affected and what happens at your first consultation with a specialist.


What is Lymphoedema?

The above video from Compton Hospice Lymphoedema Clinic explains what lymphoedema is and the techniques you can use to treat it.

Primary Lymphoedema

Primary lymphoedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system and that lead to the lymphatic system (LS) breaking down.  The "faulty" genes cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should which can then cause swelling and tissue changes.  In the case of some lymphatic malformations the lymphatic vessels did not develop properly in the womb.  Primary lymphoedema often runs in families, although not every child born to someone with this condition will develop it themselves.


Secondary Lymphoedema

Secondary lymphoedema is a failure of the lymphatic system because of damage to a normally functioning lymphatic system. For example, injury, trauma, or cancer treatment.  

Lymphoedema can occur because of infection, severe injury, burns or any other trauma that can damage the lymphatic nodes, vessels.  It can also arise because of the venous system not working efficiently i.e. those who have a deep vein thrombosis (DVT), varicose veins or ulcers.  Those patients suffering from lack of muscle movement i.e. those suffering from a stroke or Multiple Sclerosis may also be at risk. 

In the case of Lymphatic Malformations as a family we were told that our Great Granddaughter's  Cystic Hygroma was a result of the lymphatic vessels not developing properly in the womb.

No one can explain why one person gets lymphoedema and another does not.  Thankfully, we are seeing more research then ever in the UK and Globally which is giving those of us who live with this condition hope.

Although not impossible it is less likely that a child will be diagnosed with secondary lymphoedema from cancer treatment and in the seven years I have been running L-W-O I have only come across one case.


Importance of the Lymphatic System

The lymphatic system is important because:

  • It helps to drain away fluid, proteins and waste from the skin and tissues.
  • As part of the body's immune system it fights bacteria and viruses

Where will I see this?

Arms, legs but it can affect the head and neck, breasts, genitalia, and the trunk. We are told lymphoedema is not painful and in a child maybe it will manifest as a dull ache making them feel unwell.  However, our adult members will often tell you that they find lymphoedema very painful.  Children especially babies might not be able to tell you if they are in pain until they start talking.  My great granddaughter could only tell us when she was around the age of two that:

"It hurts, I poorly"


First Consultation

LE is rare in children, with a prevalence of about 1.15/100,000 persons.  Children who are born with lymphoedema or develop lymphoedema early in their young lives will hopefully be seen by a specialist quickly.  A consultation and diagnosis will be made on personal and family history to see if there is a hereditary or genetic cause. Parent/parents are so important in helping with this consultation, while I understand a parent will be anxious you can help by making notes of your child's progress, the ups and downs and how you feel your child is being affected by their swelling and therefore you will be able to ask questions of your consultant.

How do I help my child?

This column to be written




CH - Cystic Hygroma

DO - Deep Oscillation

IR - Interventional Radiology

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


lymphatic - lymph-atic or lim-fat-ik

lymphoedema - lim-fa-di-ma

This page was part of our Children's web page published in January 2017

on our L-W-O Community website 

During the 2020 Lock down the idea developed and work started on this website to

compliment our Support Group