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L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community

What is Lymphoedema?

Lymphoedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system and therefore lead to the lymphatic system 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.

What does the lymphatic system do?

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

In the case of some lymphatic malformations the lymphatic vessels did not develop properly in the womb.

Where is Lymphoedema most likely to occur

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 who is two is able to say:

"It hurts, I poorly."

Your first Consultation

LE is rare in children, with a prevalence of about 1.15/100,000 persons, 20 years old.  Children who are born with lymphoedema or develop lymphoedema very 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.

Skin Care

Good skin-care is essential for anyone living with a lymphoedema or a lymphatic malformation.  Keeping skin clean and moisturised is so important to your child's health & well-being.  However, children have a tendency to find dirt when they are playing, therefore you need to check for cuts and grazes which you must clean immediately. Gently clean the area of a cut or graze and apply antiseptic.  Watch for any redness, especially if this starts to spread, if you think your child has a temperature this might be the start of cellulitis and you should see your GP, Walk-in centre or A & E.

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 am 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', in 2018 it was 'Baby Shark' 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.  You will find lots of useful detail on our Travel Page.

The key is to plan and prepare 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

 Please make sure that the seat belts do not leave indentations

Always allow extra time

  • because toilet breaks are more frequent
  • time to wipe or wash those sticky fingers
  • Carry an Emergency Fund

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

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

Children's Support Group

L-W-O launched its Families Online Support Group on, Wednesday 4th January 2017 having been repeatedly asked "why don't you do more for children living with Lymphoedema?" 

Closed Online Support Group

Marie Barber was appointed Volunteer Children's Ambassador and supports me running this online Families Group. 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.  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 

The Children's support group is for families whose children live with Lymphoedema or Lymphatic Malformations and is free to join up to the age of 18 and then we ask families to join our adult group.

Hereditary Lymphoedema

There is no cure for lymphoedema

However it can be managed and treated.

Milroy's disease (MD) is a familial disease characterised by lymphoedema, 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. The good news with MD is that research has identified the gene VEGFR3 and while there is a long way to go with further research it gives hope for the future that one day the progression of the disease can be slowed down and better still cured.

Hereditary lymphoedema type II (Meige disease, lymphoedema praecox) develops around puberty or shortly thereafter in most individuals. This is the most common type of primary lympohedema. In addition to lymphoedema of the legs, other areas of the body such as the arms, face and larynx may be affected. Some individuals may develop yellow nails. Gene identified as FOXC2.

Lymphoedema tarda is defined as primary lymphoedema occurring after the age of 35. The legs are most often affected, but the arms and other areas may be affected as well. These a just a few brief descriptions you can find full details on the NORD website



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 curly hair. 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 intimidate you.  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)

Faith's Activities



There has been very little research into children living with lymphoedema so I was grateful to Susie Murray for telling us about this study and research which she worked on with others  titled:  A study using Visual Art Methods to explore the Perceptions & Barriers of Self-Management in Children a& Adolescents living with Lymphoedema the child participants and families where English French and Italian have a read.   


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

Children's photographs have been published with permission of the parents.

Page first published January 2017

Page last updated 05/06/2019