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.

Group 5, ILF 12th International Conference, Ontario

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Group 5 of the Framework Day at the 2025 Conference have just met in Niagara Falls, Ontario to discuss how to move forward the ILF children’s strategy. We await, not with trepidation but with great expectations, the outcome and their report and judgement.

The National Frameworks are the driving force of the ILF. It is their energy, seeking to provide solutions to the ILF dream to create a better everyday life for people living with lymphoedema and related disorders, that takes the work of the ILF forward. Without their work and mutual co-operation, supporting each other as they face the common and diverse problems within their own health care systems the ILF would be the far poorer.

Here we see one of the working groups who were focussing on the children’s work.

Group 5, Children’s strategy group

Conference website

Lymphido

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ILF are pleased to announce the commencement of the 2025 children’s camp – Ludico Educativo CMID.

A combination of events, seminars and therapy for children living with lymphoedema, their parents, carers and siblings led by a panel of international experts and tutors

5-7 September 2025 Lago dia Candia, Candia Canavese

Programme

ILF2025

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We are delighted to announce that the 12th International Lymphoedema Framework Conference will be taking place in Niagara Falls, Canada.

23 – 25 October, 2025
Registrations are open

The ILF are proud to be partnering with the Canadian Lymphedema Framework and the International Lipoedema Association to bring you the ILF2025 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.

Registration

Scientific programme

Story 6

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both feet
European female 2.5 years
Our question
Parents’ response
Type of primary lymphedema (if syndrome).
If not known just write not known or no diagnostic test done		Turner Syndrome
Parts of body affected by œdema
GenderFemale
Age of onsetbirth or before
Age of diagnosis3 months
Current age2.5
ContinentEurope
What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles?the hardest part was the trembling, not knowing what the diagnosis actually meant. with the lymph problems, we initially asked ourselves whether she would be able to learn to walk at all. with turner syndrome, it is generally the case that you don’t know what problems will arise.
What practical things do you do to make your child’s lymphedema easier to manage?we have toecaps caps and stockings. we also bandage her feet every evening. once a week we go to physiotherapy for lymphatic drainage and bandages.
Do you involve or encourage your child in their own self-care, and how?i never force her to do anything. i try to get her to do everything voluntarily. so far it’s going well. i always try to do the bandages in a pleasant atmosphere. if it doesn’t fit, we sometimes skip a night.
What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family?our physiotherapist was very helpful. she helped me when i couldn’t be active myself because i still had to digest the diagnosis. even now she always thinks along with us and supports us.
What advice would you give other parents who are at the start of the journey, just learning about the diagnosis?Find a forum of like-minded people. Connection to a real specialist, e.g. Földiklinik.

Story 5

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South American female 7 years
Our question
Parents’ response
Type of primary lymphedema (if syndrome).
If not known just write not known or no diagnostic test done		no genetic test was carried out, only lymphoscintigraphy
Parts of body affected by œdemaRight foot and toes
GenderFemale
Age of onsetSince birth
Age of diagnosis2
Current age7
ContinentSouth America
What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles?My daughter was born with both feet, a swollen abdomen and genitalia, and after imaging and soft tissue tests, at 7 days old, the pediatrician referred her to an angiologist, who taught her how to do a massage that was unknown to us, who said it was a cuddle, and didn’t explain much more than that. When she was 6 months old, the only swelling that remained was on her right foot and toes, and we continued to wait for advice from the doctor, who only wanted to see her every 6 months. When she was 18 months old, due to the shape of her nail and her swollen toes, her big toe became inflamed and the doctor requested plastic surgery to “correct” it. Two more attempts were made, which although there were no further complications of this kind, left a deformed toe and a nail that was broken in half growing. As a mother, I understood that what was happening was a demonstration of a total lack of empathy and interest in treatment, so I decided to search on Google: “babies with swollen feet”, and as I am a person who believes in science, I read the scientific articles available in the searches, and read that it was called “lymphedema”. I can say that this was the first obstacle I overcame, that of ignorance, because I managed to find a doctor, 400km away from our town, who diagnosed Alícia, and as well as explaining everything, told me that there was treatment, and that I wasn’t to blame for her condition.
What practical things do you do to make your child’s lymphedema easier to manage?Shoes are still a terrible challenge. When we have an emergency, especially with frequent upper airway infections, lymphangitis, among other health issues, the pediatrician always gives prompt advice. I recently discovered a neurological malformation, so I’m always on the lookout for every change, comment, complaint and/or behavior.
Do you involve or encourage your child in their own self-care, and how?Luckily, my daughter is a very intelligent girl and we talked about the importance of always using compression, so we managed better by being able to count on variety: bandages, tailored flat knit socks and tape. She’s already able to put the tape on in a basic way and put the sock on when I’m not around to help. She is fully aware of the volunteer work she does with Abralinfe, and likes to encourage other children to take care of themselves. We always post videos or take part in video calls with a mother and child
What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family?There were two important moments: the first was meeting people with lymphoedema, and then other families of children with lymphoedema, which took away the feeling that I was alone fighting all this; the second moment was when we founded the Brazilian Association of People with Lymphedema and their Families, Abralinfe, in March 2022, as well as learning a lot about lymphedema and being able to manage my daughter’s care, I began to have many contacts with doctors and physiotherapists, which ended up increasing the network of support and information that helps my daughter, both directly and indirectly.
What advice would you give other parents who are at the start of the journey, just learning about the diagnosis?Fortunately, many countries already have patient associations, so I think the first step is to get in touch with them, so that you have access to reliable information based on studies and scientific evidence about lymphedema, as well as access to events and the community. Supporting and strengthening patient associations is the best way forward, because they will represent you, your child, and all the people who need them in this fight; no one can make a change alone, and associations, without support and money, will cease to exist, even if they have volunteer workers, who are usually just the few managers, and who are also people like us, family members and patients. LEAVE THE WHATSAPP GROUP AND STRENGTHEN YOUR COUNTRY’S ASSOCIATION!