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Primary & Secondary Lymphoedema Online & in the Community

Children's Ambassador

L-W-O has today, Wednesday 4th January 2017, launched its Families Support Group.  I have repeatedly been asked over the last 12 months, "why don't you do more for children living with Lymphoedema".  My hesitance has always been time restraints and while I know about adult Lymphoedema, I do not have experience with children who are born with this debilitating condition.

Today L-W-O have appointed our first Voluntary Children's Ambassador.  Marie Barber will run the Families Group with her daughter Paighton Millington.  Marie joined L-W-O in 2015 trying to find answers for her young daughter who has since been diagnosed with Lymphoedema.  She has supported our work, raised awareness, written articles and undertaken fundraising.  She will be an asset to the work L-W-O does.  Marie has a background in Health and Wellness, Youth and Children's activities and is a Professional Photographer.  Please take a look at Marie's website 

In addition to Lymphoedema, the families group will be supporting Cystic Hygroma and Milroy's Disease all conditions associated with the Lymphatic System. 

Deep breathing

The lymphatic system doesn't have its own pump and the only we can move lymph fluid is through exercise or movement.  Designing specific exercises for children is a challenge.  Therefore, on this page we going to look at how we can make this fun so that our children don't necessarily know at a very young age how necessary this is.

It is important before exercise to open up the lymphatic system in your child's chest.  This allows the lymph to flow by changing the pressure in the abdomen and chest to flow back in their blood.

The first part of the Healthy Steps program to practice this deep breathing is to blow bubbles.  I sure your very young children will find this fun.


Travelling with children

As any parent or grandparent will tell you travelling with children can be a nightmare.  The repeated cry of "are we there yet" is familiar to all of us that have travelled with children.  

Travelling with a child who has one of the many lymphatic conditions adds to further stress and you will be looking to prevent further swelling and the risk of infection.

The key is to plan and prepare for your journey.

You can guarantee they will be hungry or thirsty as soon as they start travelling.  However, certain foods and drinks will increase your child's swelling.  Added to the fact that they will be strapped into a confined space whether that is on a bus, in a car, plane or train.

Your child needs to be secure when travelling but please make sure that the seat belts do not leave indentations.

Always allow extra time

  • because toilet breaks are more frequent
  • time wo wipe or wash those sticky fingers

Keeping your child's affected area clean is so important, the last thing you need on your travels is and infection.

Children's Compression


Food for their journey

You can guarantee your children will be hungry or thirst as soon as they start travelling, so pack:

  • fruit, mini sandwiches/rolls or oat bars
  • use crunchy snacks like raw vegetables
  • do not use crisps, too much salt will increase swelling
  • easy to use lunch box, within reach
  • water
  • stay away from colas or fizzy drinks as these will increase swelling

Primary Lymphoedema

Primary lymphoedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system.
The "faulty" genes cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should.
Primary lymphoedema often runs in families, although not every child born to someone with the condition will develop it themselves.

Definition of Cystic Hygroma

A cystic Hygroma, also known as cystic lymphangioma and macrocytic lymphatic malformation, is an often congenital multiloculated lymphatic lesion that can arise anywhere, but is classically found in the left posterior triangle of the neck and armpits. This is the most common form of lymphangioma.


Milroy's Disease

Milroy's disease (MD) is a familial disease characterized by lymphedema, commonly in the legs, caused by congenital abnormalities in the lymphatic system. Disruption of the normal drainage of lymph leads to fluid accumulation and hypertrophy of soft tissues.

Faith's activities



To be written

This page is a new addition to this website and is work in progress.

First produced 23/03/2017

Updated 30/08/2017