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3. Is lymphoedema genetic?

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In many children, yes. Scientists now believe that most cases of primary lymphoedema are caused by changes (variants) in genes involved in the development of the lymphatic system.
So far, researchers have identified more than 30 genes linked to primary lymphoedema. However, a genetic cause can currently be confirmed in only about one in three children who undergo genetic testing. This means that not finding a genetic variant does not rule out the diagnosis.

2. What causes lymphoedema? Can it affect other parts of the body?

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In children, lymphoedema is usually primary, meaning the lymphatic system did not develop normally before birth. Some lymphatic vessels may be missing, too small or not work as they should.
Although swelling most often affects the feet and legs, lymphoedema can occur almost anywhere in the body. It may affect the arms, hands, fingers, face, eyelids, neck or genital area.
In a small number of children, lymph fluid can also build up inside the body, for example around the lungs, inside the abdomen or, more rarely, around the heart.

4. How is lymphoedema diagnosed?

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Diagnosis usually begins with a visit to a specialist, who will ask about your child’s medical history and examine the swollen area.
One important clinical sign is Stemmer’s sign, where the skin at the base of the second toe or finger cannot be gently lifted.
To confirm the diagnosis and understand how well the lymphatic system is working, doctors may recommend: . Lymphoscintigraphy (the main test) . Lymphatic MRI in selected cases . Genetic testing when appropriate.

8. What can make lymphoedema worse?

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Several factors can increase swelling or trigger a flare-up:
. Weight gain or obesity, which places extra strain on the lymphatic system. . Skin infections, such as cellulitis or erysipelas, which can damage the lymphatic vessels and make swelling worse. . Puberty, when hormonal changes may cause lymphoedema to appear for the first time or become more noticeable. . Injuries or surgery, even minor ones in some children. . Certain medicines, including some anti-inflammatory drugs or corticosteroids, although these are much less common causes and should never be stopped without medical advice.

5. Where can my child receive specialist care?

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Because primary lymphoedema is a rare condition, your child should ideally be assessed in a specialist centre with experience in diagnosing and treating lymphatic diseases.
These centres bring together different healthcare professionals, such as doctors, physiotherapists, nurses and genetic specialists, to provide the best possible care.
Across Europe, many of these centres work together through the VASCERN network, helping families access expert advice and up-to-date treatment.

7. Can it get worse? Will my child be able to walk and play normally?

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Yes, lymphoedema can change over time, but early treatment can make a big difference.
Although it is a lifelong condition, swelling can often be well controlled with compression garments, good skin care, regular physical activity and healthy lifestyle habits.
The way lymphoedema progresses varies from child to child and depends partly on its genetic cause. In a few rare conditions, such as Turner or Noonan syndrome, the swelling may even improve on its own.
Most children with lymphoedema can walk, run, play and take part in sports. In more severe cases, swelling and tissue hardening (fibrosis) may make movement more difficult, but staying physically active is one of the best ways to help the lymphatic system work efficiently.

6. Can lymphoedema be prevented?

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Primary lymphoedema cannot usually be prevented because it is related to the way the lymphatic system develops before birth.
However, if there is a family history of lymphoedema, genetic counselling and assessment of other family members may help identify people who are at increased risk before symptoms appear.

1. What is lymphoedema and how many children are affected?

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Lymphoedema is a long-term condition that causes swelling because lymph fluid cannot drain away properly. The lymphatic system normally collects excess fluid from the body’s tissues and returns it to the bloodstream. When this system does not develop normally or does not work properly, fluid builds up and causes swelling.

Primary lymphoedema is rare in children. It affects around 1-2 children in every 100,000 before the age of 20. However, experts believe the true number may be higher because many children are diagnosed late or are initially mistaken for having another condition.

2026 13th ILF Conference

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The 13th International Lymphoedema Framework conference

We are delighted to announce that the 13th International Lymphoedema Framework Conference will be taking place in Rome, Italy in the Auditorium della Scienza e della Tecnica, Viale Umberto Tupini.

28 – 31 October, 2026 – Registrations will open shortly.
The ILF are proud to be partnering with the Italian Lymphedema Framework (ITALF) and the International Lipoedema Association to bring you the ILF2026 Conference.
Our organising and scientific Committees are busy developing a rich conference programme with speakers, sessions and workshops that you don’t want to miss! Learn with our experts and discover all the latest innovations for managing lymphoedema and related conditions in our industry exhibition.
Further information about the scientific programme, framework and patient days will be available shortly.

Good morning!

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Welcome to Lymph4kids and Lymph4parents!

We are here to have fun, to learn, to encourage each other, but not to lead you up the garden path unless it is to have fun? We are here to serve each other, let us do so as each one struggles in a different way with the complexities of this condition which we call lymphœdema.

The administrators hope you enjoy – enjoy a visit to a website you say? would we not prefer to sit in a comfortable place and converse with others of like and dissimilar minds over coffee and cake, or chocolate and truffles, ice-cream or gelato, or simply with a glass and those rock hard scones that your grandmother makes?

Well, whether you enjoy it or not, please contribute, please comment, please add material.

Comments are moderated before being published, so please also be patient!

Videos:

There is a standard upload limit of 2mb on this site, so it is difficult (not impossible) to upload large videos. The video of the Italian camp is nearly 200mb. I have uploaded it to this site using a back door. This should only ever be done by administrators not general editors or contributors. The very short videos on the Montpellier posts (here and here) are under the limit, but little more than animated graphics, There are (at least) three other ways to display videos here:

  • Link to an external site – any site where the video is located and we have permission to use it
  • YouTube
  • Vimeo

On both Vimeo and YouTube a channel is required (ILF have one on YouTube already), Videos may be marked Private (ie for here) or Public (you can find them by searchingYoutube). Examples of the same video are below.


Video held on a random external site – no guarantee that it will remain at the same location.


Embedded YouTube video. The splash screen has been set differently here than in the other two.

Embedded Vimeo video