They left this world ……
We have just heard, with great grief, about Abdulaziz’s passing.
Born in Yemen, he was able to emigrate to Canada with all his family.
He was 11.
May he Rest in Peace.
New Patients, News from Families
Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and Alice have recently joined us.
We are now in contact with 540 patients and families. Their isolation and loneliness facing Cutis Laxa has disappeared.
Welcome to all of you.
We are glad you joined the Big Cutis Laxa Family.
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:
Distribution of CL according to Types and Countries
Our census of Cutis Laxa patients allows today to establish
its breakdown by known types and also by countries
You can find here the table updated on 2024, February 12th
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
KAPCODE Study
Marie-Claude Boiteux took part in writing a new scientific publication : « Testimonies, feelings, complaints and emotional experiences of patients suffering from dermatosis on social medias : French Infodemiologic* Study of patients’ uncensored words ».
Steming from a work led by Pierre Fabre Dermo-Cosmetic & Personal Care together with the society Kap Code specialised in the analysis of real-life data in health who listened for 3 years to patients’ uncensored words as publicly expressed on social media.
The internet offers a forum to those for whom the skin disorder bridles their social relationships. Through social media, they share their real-life experience and reveal what they do not say – because they do not dare to or because of lack of time – in medical consultations: Self-image, physical and psychological impacts, therapeutic roving, etc.
Collected, analysed and related verbatims, this work shows the emergency and need to « change our gaze on visible disorders of the skin”. https://www.changer-de-regard.com/#ecoute-reseaux
*Infodemiology was defined by Gunther Eysenbach in the early 2000s as information epidemiology.It is an area of science research focused on scanning the internet for user-contributed health-related content, with the ultimate goal of improving public health. It is also defined as the science of mitigating public health problems resulting from an infodemic.
VDS (Visible Disorders of the Skin) Program
This program has been set up by the “Patient Relationship” Department of Pierre Fabre Laboratories.
Living with a visible disorder of the skin on your face and/or hands, means been continuously under the gaze of others, embarrassment and reactions that are sometimes disconcerting and even hurtful from people just passing by or met daily.
The gaze, even covert, can have unsuspected impacts on the life of people living with a visible disorder of the skin.
Let’s become aware of the power of a gaze that, if it can damage the daily life, can also illuminate it!
Listen to the podcast with patients’ interviews and try the « e-motion experience », a unique moment « in the skin of a patient ».
Enjoy visiting its page, in French and/or English : https://www.changer-de-regard.com/
Another booklet recently published
This is for schools and communities to welcome a child with a skin disorder.
It lists the consequences the disorder may have, the specific needs, the possible or necessary layouts, as well as the role and place of the education team.
You can download it from Fimarad website (www.fimarad.org)
Skin Disability Guides
After two years of collaborative work with patients, medical professionals, medico-social professionals and the National Office of Solidarity for Autonomy (CNSA), here is a concrete result of the work led by the FFP.
Because the skin is the biggest organ of our body and to understand the impacts of skin disorders, the Skin Disability Guides provide the urgent keys to evaluate the disabilities patients are facing.
The Patient Guide help them correctly fill the needed forms to assert their rights if it is possible in their country.
These documents are downloadable hereunder (in French).
Social Media Listening
An article has just been published in JEADV :
Patients’ testimonies, feelings, complaints and emotional experiences with dermatoses on open social media: