They left this world

We are so sad, our Big Cutis Laxa Family has just lost two of its youngest members, Oceane and Rory.

It is never acceptable to see our children die so young.

All our thoughts to their parents and families.

Vonda left us too on 1st January 2026. She had joined CLI in 2009 and was diagnosed with ACL.

Rest In Peace Vonda.

Welcome

New Patients, New Families

Sara and her sister Abeer, Bennett, Tucker, Eileen, Youssef, Ella, Catarina, Rory, Malak, Carolina and Gabriel joined us over the last six month. Including them, there are now  581 patients worldwide who our Big Cutis Laxa Family helps, supports and accompanies in their search for answers to their questions.

 

We also sometimes know about other patients, especially when they take part in reports posted on social media. Thanks to BBC Africa, this is how we knew about an African family. Unfortunately, despite our approaches to the channel, the doctors interviewed and the directors of this report we couldn’t contact them or, at least, let them know we are here.  I am so sorry about that.

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

Another Day in Bergame

13th September 

We traveled back to Bergame for an evening of information and exchanges about what it is like to live with Cutis Laxa.

Roxanne and her parents were with us for this second Italian event with partners and authorities who had organised « Semplicemente Amici ».

Exchanges and questions were very interesting and increased understanding of what Cutis Laxa is and how it impacts patients’ lives.

 

Welcome

New members

Rebecca, Sami, Robert, Anna, Zoé, Mercédes, Sarah, Emily, Elena, Tawn, Ember, Mariam, Giulano, Quentin,

our Big Cutis Laxa Family is here to help and support you and to answer your questions.

Counting you, we are now 567 patients worlwide, suffering from Cutis Laxa.

They left this world

Alas ! more deaths plunged us in mourning:

Nathan, Maui, Tony and Tasha.

Adults or children, new members or those we’ve known for years, we always hear with great sadness that one of our members has left this world. They meet all those who have already left. They remain in our hearts and thoughts forever. May they Rest In Peace.

 

In our hearts and thoughts

Alas, we are very sad to let you know about two deaths:

Lucille, who joined our private Facebook group in 2010 and was an active member

and

Safaa who was only 18.

To their mourning families we give our support and thoughts in this difficult time.

Since we set up CLI in 2002, 27 patients have passed away. They remain in our hearts and thoughts.

 

Welcome

New Contacts, Families’ News

Daniella, Lucie, Sara, Jamila, Shelley, MDMBen, Mirxan, Maya and Andres have joined us.

We are now in contact with 551 patients and families.

Their isolation and loneliness facing Cutis Laxa has disappeared.

Welcome to you all, we are happy you joined our Big Cutis Laxa Family.

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.

Welcome

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.