NEW MUTATIONS

4 new genetic mutations were recently found:

 

LOX : This gene of the 5-Lysyl oxidase family is involved in initiating of cross-linking of Elastin and Collagen. The mutation leads to cardiovascular, respiratory and bone symptoms, especially fractures. This is why it was initially considered to be a new type of osteogenesis imperfecta (glass bones disorder). But the discovery of fragmented elastic fibers allowed this mutation to be included in Cutis Laxa Syndroms. It is a recessive form.

 

EFEMP1 (Fibulin3): The consequences, besides lax skin, of this mutation are multiple hernias and joint hypermobility as well as mild intellectual/learning disability. It is a new recessive type of Cutis Laxa.

 

LTBP1 : This mutation is distinguished by lax skin, inguinal hernias, craniofacial dysmorphology, various heart defects and prominent skeletal features (short stature, brachydactyly, craniosynostosis,..). It is another new recessive type of Cutis Laxa.

 

PI4K2A : This 4th new mutation is characterised by the following clinical signs : lax skin, involuntary movements (neurological issue), dysmorphism and intellectual/learning disability. It is also a recessive type.

 

A 5th new mutation has recently been found and we are longing for it to be published so we can tell you about it.

 

Thanks to all the researchers for their amazing work in basic knowledge of Cutis Laxa. All these findings are essential to give patients better care and offer them a better quality of life.

 

NEW MUTATIONS

Even if I cannot tell you more since publications have not yet taken place, I am very happy and proud of our researchers who work on Cutis Laxa :

5 NEW MUTATIONS have just been discovered.

For all patients whose precise type has not yet been identified, this is an extraordinary chance.

You can be tested now with the new mutations.

Attending the 6th Cutis Laxa Days in Ghent in September 2022  can be the opportunity for you to know more about the precise type you are suffering from.

Cutis Laxa Videos …… N°7

Treatments and surgeries are the topics of our 7th video about Cutis Laxa

 

 

And don’t forget you can get subtittles in your own language.

Cutis Laxa Videos …… N°4

Today I talk about the impact of the disorder in adulthood: love life, finding a job, etc.

 

and you can get subtittles in your own language :

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 …. 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)

6th CUTIS LAXA DAYS

SAVE THE DATES

The 6th Cutis Laxa  Days will be held at the University Hospital of Ghent( Belgium)

on 14th, 15th and 16th September 2022