Category Archives: Stories

French camp 2024

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We have been asked to say a little more about the forthcoming camp in Languedoc. News comes out slowly, but we shall add to it here. For our first educational video, please watch the stories of nine of our young people:

Une production de The International Lymphoedema Framework (ILF) et du Partenariat Français du Lymphoedème (PFL). Découvrez les témoignages de Théo, Marin, Arthur, Ludivine, Christopher, Guillaume, Soren, Léo, Anna, Austin originaires des quatre coins du monde à propos de leur lymphoedème.

Lymphœdema – a teenager’s perspective

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Published by VASCERN on their YouTube channel:

VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.

Genetic Testing for primary lymphœdema – a mother’s perspective

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Published by VASCERN on their YouTube channel:

VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.

Born differently – the teen with the swollen body

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Published by Truly on its YouTube channel, which reports:

18-YEAR-OLD BR was born with a rare form of lymphœdema called Hennekam syndrome. Unlike most people with lymphœdema who experience swelling due to excess fluid in one or two limbs, Bella has swelling throughout her entire body. Undeterred by life’s obstacles, Bella is a positive and outgoing person, who has a fantastic network of friends and family that support her. Bella one day hopes to be the first disabled female to win a BAFTA for Directing.

Lymphœdema – a child’s perspective

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Published by VASCERN on their YouTube channel:

VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.