Syndrome de Marfan den-i.lu asbl

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

20/03/2026

🩵Did you know?

Several rare conditions that affect connective tissue and blood vessels are closely related. Loeys-Dietz syndrome, Marfan syndrome, and Vascular Ehlers-Danlos syndrome belong to a broader family of inherited connective tissue disorders that can affect the arteries and other tissues.

Because these conditions share overlapping features, they are often studied and managed together by the same medical specialists and research networks. Understanding these connections helps improve diagnosis, care, and research for everyone in this community.

16/03/2026

Notoriously intrusive, headaches come in many forms and follow their own paths. After recently experiencing several, a supporter asked whether any are specific to Marfan and Loeys-Dietz syndromes. https://tinyurl.com/2ubev2t8
Join the Trust today to find our more: https://tinyurl.com/32meuh56

16/03/2026

🩵Did you know?

Genetics doesn’t always tell the whole story. In families with Loeys-Dietz syndrome, people who share the same mutation can still experience the condition very differently. Some may have more noticeable symptoms, while others have milder signs — which is why regular monitoring and individualized care are so important.

14/03/2026

Alike in many ways, apart in others, Marfan and Loeys-Dietz syndromes are connective tissue disorders, each with defining characteristics. Some features they share, others they don’t. Here is a handy table highlighting a few of their salient symptoms. For the full comprehensive table, follow this link to our website. https://tinyurl.com/52ahcdub

14/03/2026

🩵Did you know?

The gene pathway involved in Loeys-Dietz syndrome — called TGF-beta signaling — also plays an important role in processes like wound healing and the immune system.

This shows how one biological pathway can influence many different functions in the body, which is why Loeys-Dietz syndrome can affect multiple systems.

12/03/2026

🩵Did you know?

Some people with Loeys-Dietz syndrome (LDS) have a tiny, split uvula — it can even look like a little heart! While it might seem like a small detail, it’s actually one of the clues doctors use to recognize this rare connective tissue condition early.