Syndrome de Marfan den-i.lu asbl

31/05/2026

Reflecting on the intricacies of aortic measurements and the genetics that shape connective tissue disorders, patient pioneer Tal Golesworthy is a fascinating guide in this latest conversation with the Marfan Trust. Watch it now: https://tinyurl.com/bdtxccb7

24/05/2026

🙏👍🏻💟

04/05/2026

23/04/2026

A thoracic aortic dissection is a medical emergency in which a tear occurs in the inner layer of the aorta. Blood rushes through the tear, causing the inner and middle layers of the aorta to split (dissect).

If you or a loved one has experienced an aortic dissection, it’s important to ask your doctor questions like these: what type of dissection did I have (Type A or Type B?) Do I have a residual dissection in any other part of my aorta?

For other questions and information, please visit our website.

31/03/2026

🩵The last two months we posted facts about Marfan and Loeys–Dietz Syndrome and gave an impression of how affected people in Europe feel and live with these diseases.
At the end of the awareness months, we want to thank the specialists in the European countries and in the European Reference Network (among others VASCERN) for their efforts to deal with our diseases and to enable patients to have a reasonably good life.

THANK YOU to all the cardiologists, surgeons, geneticists, orthopaedists, physiotherapists, ophthalmologists, neurologists, psychotherapists, endocrinologists, radiologists and of course all the nurses, assistants, social workers…🩵

27/03/2026

27/03/2026

Le Syndrome du spaghetti (d'après Marie Vareille) 🎭🧬 - https://mailchi.mp/f101g/le-syndrome-du-spaghetti
https://www.flagey.be/fr/activity/13530-le-syndrome-du-spaghetti-d-apres-marie-vareille-au-profit-de-la-recherche-dediee-au-syndrome-de-marfan

24/03/2026

Once upon a time, there was a lonely boy, taunted for being too tall and too thin. He grew into a teller of tales, his stories woven into our collective consciousness. Hans Christian Andersen’s autobiographical fairy tales were shaped by his outsider status; his own life inspired many of them, none more so than The Ugly Duckling, the story of a spurned outcast who transforms into a beautiful swan. Some now believe that the prolific author had Marfan syndrome. https://tinyurl.com/mrxr9zb2

22/03/2026

Subtly different in their symptoms, Marfan and Loeys-Dietz syndromes both carry gastrointestinal implications that are similar but distinct, outlined in our table. For a full description of what these entail, click here: https://tinyurl.com/56juzst2

Research into gastrointestinal symptoms continues in connective tissue disorders. The most important thing to remember is not to ignore new symptoms or changes to your bowel habits such as:
• Bleeding from the re**um
• Weight loss of more than half a stone without trying
• Any persistent change in bowel habit (more than a month) for than half a stone without trying
• Any persistent change in bowel habit (more than a month) for no obvious reason like change to diet, new medication, stress
• Persistent fevers or redness