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Primary & Secondary Lymphoedema Online & in the Community

Children's Ambassador

L-W-O launched its Families Online Support Group on, Wednesday 4th January 2017.  I was repeatedly been asked "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 although I have been researching Cystic Hygroma which comes under the heading of Lymphatic Malformations.

Closed Online Support Group

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.


Singing and Dancing

Children love to sing, maybe their favourite nursery rhymes, or my grandchildren use to love 'Bob the Builder' and although the repetition of these songs can drive the family mad, it’s the way they learn.  Importantly it always helps to keep that lymphatic fluid moving.

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

Childrens Support Group

We have a children's online closed support group for families who children have Lymphoedema, Cystic Hygroma or Milroy's:



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

Faith's activities


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.

Bullying a plant

This video explains in a simply on what happens when we are bullied.

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.


Ezmae Kate

Ezmae-Kate was born with Cystic Hygroma and she is the most delightful little minx you could every wish to meet.  I can say this because I am proud that she is my great granddaughter.  Her Cystic Hygroma was not picked up in the womb through all the scans and was diagnosed on the second day of her little life.  Nobody can tell us why this has happened to her.  At this time, she is under Birmingham's Children’s Hospital and will shortly be undergoing an operation to remove the swelling from her face.  Some days it is not that visible but if she becomes poorly or upset it is more visible.  The photographs show her with different stages of CH, but also shows how happy our little minx is and how she has a full and active life for her age.

Ezmae Kate



Bullying is the worst thing in life that can happen to anyone.  The after effects can stay with you a very long time and some people will never get over it.  I was bullied in school simply because I had tight curls. Thankfully I have had the last laugh because my naturally curly, wavy hair now saves me pounds.  Whatever your journey in life we all meet someone along the way that will try to intimated.  My answer now as an adult is that they are the ones with a problem not you.

So what has this got to do with lymphoedema?

One of our younger members was leaving nursery, wearing her compression leggings and some young boys thought it was funny to ridicule her as she ran to her Mum.  Our young member was clearly upset and certainly didn't understand why these boys were being so horrible.   Our Mum spoke to the boys and then she was chastised by the boys mothers for speaking to their sons.  Herein lies the problem.  (Work in progress)

Page first published January 2017

Page last updated 01/08/2018