| European male 6 years | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | No known syndrome/no genetic test performed |
| Parts of body affected by œdema | Hands, forearms, right lower cheek, intestine |
| Gender | Male |
| Age of onset | From birth |
| Age of diagnosis | 6 months |
| Current age | 6 years |
| Continent | Europe |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | Not knowing how the situation will evolve, possible future challenges linked to other children’s reactions. In general we have tried to have a positive and constructive approach, openly discussing things and supporting him in the journey of understanding the condition and how it may or may not limit his life. |
| What practical things do you do to make your child’s lymphedema easier to manage? | We massage and bandage almost every night, have adapted our family’s diet to accommodate some restrictions that affect him |
| Do you involve or encourage your child in their own self-care, and how? | We have educated him about wht he should and should not eat, so he can make correct choices when we are not there. He is still too young to manage self bandaging. He is aware of the importance of skin care but again a little too young to be consistent in applying the rules. |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | Contact with other parents through a patient association has been valuable as well as gradually building a support network around us with a group of doctors, physiotherapists, and compressive garment suppliers we trust and rely on for guidance and therapy. |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | I would strongly advise them to focus on the good, look at the positives and enjoy every day with your child beyond the condition. I often find that the approach from those around us (other parents, medical professional etc.) has been focussed on the negatives, the challenges and the obstacles but as parents we are conditioned by this attitude and are not encouraged to focus on how great life can be for our family regardless of the condition that affects our children. |
Didi Okoh
DIdi Okoh is a British athlete selected for the British 2024 team who suffers from lymphoedema in her left leg. As you will see she has not let it hinder her progress and performance. She is due to run on Saturday 7th September…
and LinkedIn
Didi Okoh’s training also receives a mention on LinkedIn
A parent’s journey – 1
| European male 20 years | |
|---|---|
| Our question | Parents’ response |
| Type of primary lymphedema (if syndrome). If not known just write not known or no diagnostic test done | Gata2 Immune deficiency |
| Parts of body affected by œdema | From abdomen and down, in both legs |
| Gender | male |
| Age of onset | 6 |
| Age of diagnosis | 7 ( and gata2 at 13 y) |
| Current age | 20 |
| Continent | Europe |
| What was the hardest part learning about your child’s diagnosis and how did you overcome some of these obstacles? | Lack of information and lack of networks, rare diseases means you are completely on your own without any networks or supportive organisations/association. No uniform information of what is the best practice and treatment, especially if you experience symptoms differently than other patients. |
| What practical things do you do to make your child’s lymphedema easier to manage? | In the beginning I had to sew pants myself, now- luckily – fashion allow us to by wide legged women’s trouser (unisex looking 😉) from some stores. Have medication ready if infection occurs. I did learn how to do manual drainage. Now I try to activate him. |
| Do you involve or encourage your child in their own self-care, and how? | I try to motivate him to choose healthy food, do sports and to take care of his skin by e.g. apply crème. I still do a lot in order to allow my son to be a young man going to school. He needs to live a “ normal” life and I supports as much as possible |
| What support functions (i.e. medical professional, patient association, school) has been the most helpful to you and your family? | Mostly, parents to other young people with rare diseases. They are the experts in living with rare diseases and gives the best support and understanding of the challenges we face daily, we also share practical issues like getting reimbursement and the necessary help |
| What advice would you give other parents who are at the start of the journey, just learning about the diagnosis? | Keep searching for answers, and try to find other families to exchange practical information and advice. |
We remind our reader that the above is the patients’ story. It is not medical advice.
Further information is available from:
Our response:
GATA2 loss of function mutations lead to an autosomal dominant primary lymphedema associated with a predisposition to acute myeloid leukemia and immune deficiency. It means that if such a mutation is identified, then a specialized haematological advice and follow up is required as well as the detection of the carriers of the mutation within the family as specific preventive management is possible.
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Ambassadors
At the recent camp held in June 2024 near Montpellier we appointed three young people as ambassadors for the exchange of ideas and information, and promotion of good practice amongst young people.
These three and some others will communicate in a WhatsApp Group. If you would like to join the group, please let us know. Parents too are invited to join their own WhatsApp group. We may have groups available in different languages. Please contact us if you would like more information.
French Camp – postfix
Reported on LinkedIn
CLAP DE FIN de l’international children camp 2024 !
170 personnes venues de 11 pays différents se sont retrouvés pendant 4 jours autour d’une même cause : le lymphœdème. Pour que les enfants touchés et les familles ne soient plus seules, pour que le lymphœdème soit mieux connu, mieux reconnu, pour que la recherche avance.
👏 aux 28 familles venues d’Allemagne, d’Espagne, de France, d’Italie, d’Irlande et de Suisse qui nous ont rejoint en Ardèche. Merci pour leur confiance ❤️
👏 aux 39 professionnels et aux 16 bénévoles venus d’Angleterre, de Belgique, d’Espagne, des Etats-Unis, de France, d’Italie, d’Irlande, de Pologne et du Portugal.
👏 aux organisateurs, le Centre de Référence de Montpellier et le CMID Italie, et ses partenaires le PFL, l’AVML, Lymphido, l’Italf et l’ILF. Merci aux donateurs et aux mécènes.
👏 à Isabelle Quéré et à Elodie Stasi pour permettre à ces camps internationaux d’exister et pour tout leur travail auprès des enfants et des familles.
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A l’approche des JO, tous nos athlètes du camp international ont déjà gagné.
🏅équipe du CHU de Montpellier : Isabelle Quéré, Sandrine MESTRE GODIN, Emilie Valdelievre, Maria de los Santos DONOSO IZQUIERDO, Patricia Maquez Cardenas, Géraldine Davidou, Sandrine Roussillon, Agnès Blanc, Cédric Robert, Anaïs FORESTIER, Stéphanie Badouaille, Fabienne Mourgues, Hélène Pourquier et les organisatrices Domitille Ferron et Morgane Denis
🏅équipe italienne : Elodie Stasi, Lorena Acquadro, Fabio Romaldini, Daniela Vaglio, Sara Balducci, Alessandra Gazzotti
🏅équipe anglaise : Christine Moffatt, Susan Noerregaard, Chris Norregaard
🏅équipe irlandaise : Meadbh Mac Sweeney, Norah Kyne
🏅équipe espagnole : sonia ehrenberg, Obdulia Moya, ISABEL FORNER CORDERO, Eulalia Torres
🏅équipe belge : Jean-Paul Belgrado, Véronique Fuchs, Kevin Dusart, Cindy Santos de Matos
🏅équipe de l’hôpital Cognacq-Jay : Caroline Fourgeaud, Patricia Traineau
🏅bénévoles du PFL et de l’AVML : Jean-Pierre Bécus, Marlène Coupé, Samantha Pierret, Laurence Toulet-Delaporte, Olivier Kkoweb, Audrey Baille Peyruchaud, Christine Ferrotti, Guy Doladille
🏅les autres bénévoles : Emmanuel Pajanipadeatchy, Pierre Gonon,
peron anthony, CHRISTEL JOST, Jerome Monin, Antony Luce, Mathéo Roussillon
🏅le dessinateur Maxime Masgrau et le photographe Romain Guédé
🏅les guests internationaux : Manuela Lourenço Marques, Andrzej Szuba, Stanley Rockson
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Centre de référence Lymphoedèmes primaires / Partenariat Français du Lymphoedème / AVML / ILF • International Lymphoedema Framework / CHU de Montpellier / Fonds Guilhem – CHU de Montpellier / Filière FAVA-Multi / VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases / Société Française de Lymphologie / Société Française de Médecine Vasculaire
It’s Not Bad
Written by Jamie Gaddis Stephens (Author), Jessica Gaddis English (Editor) It’s Not Bad dives into what is called, lymphœdema. Primary lymphœdema affects children all around the world but it is a rare condition. This story is geared towards children who struggle with understanding their disease.
Available from the Jo Rising Foundation
Super Nan and the Secret Support Network
What happens when children see your lymphœdema for the first time? How do you deal with it? How do they deal with it?
Michelle Freke’s book explores these questions in a child friendly, super-hero type way.
The Big Book of Lymphœdema
Stora boken om lymfödem är speciellt riktad till barn. Den förklarar på ett lättförståeligt sätt vad lymfödem är och hur det kan behandlas. – SÖF
Författare är Dr Jacquelyne Todd 
ISBN 978-91-637-2163-2
The award-winning children’s book The Big Book of Lymphoedema aims to help children and families understand the condition by presenting useful information in a colourful, eye-catching and child-friendly format. Originally launched in April 2010, the book was written by Dr Jacquelyne Todd, who was a physiotherapist consultant in lymphoedema at The Leeds Teaching Hospitals NHS Trust, before she retired in 2013. A new edition with subtle updates is available from the LSN.
A Child’s View
From the Lymphoedema Network Wales:
A Child’s View