Poem for a woman diagnosed with Cutis Laxa

She had been told that it would be difficult

She had been told that her body would be a limit, that her rare disease would draw the contours of her life before she even had time to dream. The doctors spoke of caution. Some spoke of the impossible.

But she spoke of hope.

Her adolescence was not kind. The gazes, the judgments, the criticisms… She was sometimes reduced to diagnosis, as if she was just a medical label. We doubted her, her strength, her future.

Yet, behind the silences and tears, there was quiet determination. A desire to prove – not to others, but to herself – that her life is not dictated by fear.

The disease is there, yes. Real. Demanding. Sometimes unfair.

But she chose to fight. To heal herself, to listen to her body, to fall and get back up. She turned every doubt into a driving force. Each critic in energy. Every obstacle in learning.

She didn’t grow up despite the disease. She grew up with it.

Today she is married. She has children. She lives what she was told is uncertain, even unattainable. Not because everything was easy – but because she never stopped believing. It proved that a diagnosis is not a destiny, that a difficult adolescence does not define an entire life.

Her story is not one of a miracle.

It is that of a fight.

Of silent perseverance.

Of hope that was kept alive every day, even when everything seemed bleak.

And above all, it is proof that one can overcome predictions, judgments and despair…. When you decide not to give up.

Many Thanks to the anonymous writter of these words

In the Media

11th March :

Local radio “Jordanne FM” interview with Philippe Barrière, Chair of La Pastourelle, announcing the Salers Night Fever

Read to the interview (in French)

30th March:

Facebook Page «Dermato Info»: presenting CLI

03rd May:

Charente Libre: Walking for CLI on 1st of May

30 Mai :

WHA Resolutions are voted

Read the press release (in English)

May 2025:

La Pastourelle: Brochure and Facebook page announcing the « Night Fever in Salers » to the benefit of CLI

July 2025:

Taking stock of the « Heroes Run » : CLI won the prize for the best costumes.

In the Media

02nd September 2024 

Info-Chalon (newspaper) Official opening of the resource center for tele-expertise in dermatology in Chalon-sur-Saône.

Read the article (in French)

 

10th September 2024

 Le Journal de Saone et Loire (Newspaper) Official opening of the resource center for tele-expertise in dermatology in Chalon-sur-Saône.

Read the article (in French)

 

29th November 2024

Charente Libre  Handing over the € 2,500 check to the benefit of Cutis Laxa Internationale by  Triathlon de Sireuil

Read the article (in French)

 

Autumn 2024

la Gazette Bonsoise Cutis Laxa Internationale, beyond the frontiers of Bons en Chablais

Read the article (in French)

La Sorbonne University of the Patients

Marie-Claude Boiteux was interviewed for the videos used during the Masterclass at the University for Patients in La Sorbonne (in French) (https://universitedespatients-sorbonne.fr/). The title of the presentation is “From loneliness to an International Organisation”.   see it  here (in French)

IN THE MEDIA

06th March 2024 Le Monde (French Newspaper)

Rare Disorders – the Challenge of Diagnosis

Read the article (In French)

 

15th March 2024 Festival of Communication in Health :

Interview with Catherine Baissac, Patient relationship – Pierre Fabre Dermato-Cosmetics

Read the article (In French)

 

28th April 2024 Charente Libre (French Newspaper) :

The « Brin d’Aillet » run in Sireuil (France) to the benefit of Cutis Laxa Internationale

Read the article (in French)

The growing role of patient groups in healthcare research.

Patient groups contribute to research in three different ways :

  • In clinical trials and real world evidence : The groups offer a unique perspective and act as research subjects, advisors, reviewers, and even researchers. They can be involved at any stage of clinical trials from the pre-approval and design to making sure the research results reach their patient community.
  • In Health Technology Assessment (HTA) : This is a systematic process that evaluates technologies like medicines and medical devices. The assessment determines if they are clinically effective, cost effective or have any social/ethical impact. Patients and patient groups are increasingly involved in the process, providing insight into their condition and the impact of new technologies.
  • In Regulatory decisions : Patient groups are involved in regulatory processes offering real-world evidence for better medical regulation. In Europe, their views are crucial for transparent communication on medicines and valuable input into the review of information on medicines like package leaflets and safety communications.

Read the article published by Patientview in February 2024 (in English)

ELASTICITY OF LIFE

This is the title of the book recently published, in French and in English, by Dr Pascal SOMMER, Emeritus Research Director oat the French National Center for Scientific Research (CNRS).

He has been following Cutis Laxa and our association for more than 20 years.

The book is available online, printed or downloadable:

HERE

Survey ALL

Carried out between January and April 2023, together with EMMA Society, this international survey evaluates the prevalence (number of cases among a defined population), impacts, behaviours and needs of different skins and skin disorders depending on geographical areas, countries or complexion.

It included 50,552 participants (adults ≥16 yo) in 20 countries (China, USA, Brazil, India, Australia, France, Italy, Canada, Denmark, Germany, Israel, Kenya, Mexico, Poland, Portugal, Senegal, South Africa, South Korea, Spain and United Arab Emirates) distributed across the 5 continents.

It is therefore the biggest private database in  dermo-cosmetics.

Take a look at all the results on this page : https://www.changer-de-regard.com/#all