Cutis Laxa Videos …….. N°3

Here is the third episode of our videos.

A painful and emotional memory…… receiving the diagnosis…….

and here is how you can get subtittles in your own language

Cutis Laxa Videos….. N°2

Here is the 2nd episode of the Cutis Laxa videos.

Marie-Claude Boiteux talks about “difference and psychological impact”

 

and here is how you can get subtittles in your own language

see you next week for episode N°3

Cutis Laxa Videos…… N°1

Here is the first of 8 videos edited by EwenLife on their Youtube Channel

Marie-Claude Boiteux explains what Cutis Laxa is and the different types.

It is in French, but here is how you can get subtittles in your own language

CUTIS LAXA WHITE BOOK

Since  Cutis Laxa Internationale was set up, we have received many patients’ and parents’ testimonies.

They are now collected in a newly published book :

« Cutis Laxa, Story of a Rare Disorder, Patients’ testimonies ».

It is available in French, English and Spanish. We will send it to you on request, at €25 per copy.

Living with a Rare Disorder in France

Orphanet has just edited its new study about rare disorders in France.

You can read here the whole study (in French)

Vaccination advices

A vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simuA vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simultaneously.

There is no reason for people with rare disease to avoid vaccination against SARS-CoV-2. Vaccination is important to protect the whole population as well as patients with rare skin diseases, although ultimately it remains the personal choice of each individual.

We particularly encourage vaccination for patients with disorders which may affect the immune system making complications of COVID-19. The currently available “mRNA vaccines” are dead vaccines and should not pose a risk to patients with immune deficiency and those undergoing immunosuppressive treatment.

Depending on the availability of other types of vaccines, in the future, new recommendations may be necessary.

Mendelian connective tissue disorders

There is no contraindication to vaccination against SARS-CoV-2 for patients with Monogenic connective tissue disorders.

Vaccination against COVID19 is important for the whole population including patients with connective tissue disorders. Although vaccination remains the patient’s choice, as it is the own choice for any citizen.

It could be strongly recommended for patients with connective tissue disorders, particularly for those with bad general condition, severe vascular and/or important lung involvement.

For detailed advice, don’t hesitate to contact the specialist who ensures your medical follow-up by email, fax or telephone.

©https://ern-skin.eu/vaccination-advices/

Living with …. Cutis Laxa

The French monthly magazine “La Revue du Praticien” (The Medical Practitioner’s Journal) published an article on Cutis Laxa in its November issue.

 

Read the article here (in French)

Annual Meeting and 2nd Conference of the French Federation for Skin

On 1st December 2020 we attended online the Annual Meeting and 2nd Conference of the French Federation for Skin (FFP).

Following the 2020 annual report and the projects for 2021,

the FFP conference opened the floor to experts on the impact of Covid-19 for skin disorders,

paediatric dermatology, users’ participation on the evaluation of health products

and dermatology research.

Needless to say that it was an intense and riveting morning.

Annual Day of the French Network for Rare Skin Disorders

27th November 2020 :  The Annual FIMARAD meeting (French Health Network for Rare Skin Disorders).

 

Core discussions of the day were : Taking stock of the work done in 2020;

 

Issues of the MDPH files (Local House for Disabled People); How to involve Patient representatives;

 

organising the workgroups for 2021;

and ePAGs’ work

See the presentations here

CUTIS LAXA PATIENT JOURNEYS

We have developped 2 patient journeys based on testimonies from our members on what it is like to live with a Cutis Laxa.

Those documents aim to be a tool for health care professionals and patients during a consultation to help them agree on the best possible care on a long term basis.

They will be updated as often as needed to fit with the patients’ daily life and the most recent findings and treatments.

CUTIS LAXA WITH ARTERIES AND LUNGS SYMPTOMS

CUTIS LAXA WITH NEURO AND SKELETON SYMPTOMS