"The marfan multidisciplinary consultation organised at UCL " Cross interview with Prof. Thierry Sluysmans and Ludivine Verboogen

2020 / Wednesday, December 30th, 2020

This interview was published in "Le Chaînon - la revue des associations de patients et de proches" of the LUSS, N° 52 in September 2020.

Le Chaînon (LC): Ludivine, what is Marfan syndrome?

Ludivine Verboogen (LV): Marfan Syndrome is a rare multi-systemic disease that affects the heart, eyes, lungs and musculoskeletal system.

Patients and their relatives generally go through a real obstacle course to obtain a diagnosis and then to find the various specialist doctors capable of ensuring the therapeutic follow-up of the damage caused by the disease.

LC: Professor Thierry Sluysmans, what does the multidisciplinary consultation organised at the Université catholique de Louvain (UCL) consist of?

Thierry Sluysmans (TS): The multidisciplinary consultation set up at the UCL brings together the various specialists whose expertise is required for the diagnosis and monitoring of Marfan syndrome. The team includes cardiologists, geneticists, ophthalmologists, orthopaedists, ENT specialists and speech therapists. During the multidisciplinary consultation, the patient with (or suspected of having) Marfan syndrome is examined in a single morning by these specialists.

LC: Ludivine, what are the benefits of this multidisciplinary consultation for patients?

LV: The comprehensive approach speeds up the diagnosis of the disease. It then makes it possible to improve the management of this rare multi-systemic disease. On a daily basis, multidisciplinary consultations are life-changing because they limit the multiplication of consultations with different specialists in different places and at different times, which can be complex to manage in a family and professional setting.

LC: Professor Sluysmans, what are the benefits for doctors and researchers?

TS: For physicians, multidisciplinary consultation has the advantage of consolidating all the data in the patient's medical record, which promotes optimal monitoring of the patient's health. For researchers, this grouping makes it possible to feed scientific research with data.

LC: Do you have anything to add?

LV: Personally, I am delighted that the consultation set up at the UCL exists and I can only hope that this practice will continue and be extended to other rare diseases.

As a member of the Belgian Association for Marfan Syndrome (ABSM), I must hope that this accompaniment will be further improved with regard to the transition of children to adult consultations.

And, as Vice-President of RaDiOrg, I must advocate for existing multidisciplinary teams to be funded and recognized to develop into true Centres of Expertise. This is what was foreseen in the Rare Diseases Action Plan, which has been decidedly slow to take effect.

By Ludivine VERBOOGEN, mother of a little boy with Marfan syndrome, member of the Belgian Association of Marfan Syndrome, Vice-President of RaDiOrg and founder of Fondation 101 Génomes and by Prof. Thierry SLUYSMANS, paediatric cardiologist in charge of the multidisciplinary Marfan consultation organised at the UCL.

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