A name that sounds almost gentle, until you realize it carries generations of uncertainty. It’s caused by changes in the PTEN gene and can affect the skin, thyroid, breasts and even how you feel day to day.
Some diseases you can read about online, but some, you only understand by living them. Cowden Syndrome is one of those. A lump, a rash, fatigue that no rest can fix. It appears in unexpected ways.
Everyone experiences it differently. Some people face higher risks of certain cancers, others have it lighter, small growths, and many struggles are invisible. There’s also the emotional side: fear, frustration and having to explain things that can’t always be seen.
Out of that experience, I created CS ECHO, a digital initiative sharing educational content in English, Arabic and French. We connect with patients, families and healthcare professionals, providing guidance, support and a space where no one has to feel alone.
I’m Salima QRIBIS, and I live with Cowden syndrome. This journey has taught me how important it is to combine advocacy with creativity. Through storytelling, I aim to make rare conditions visible and understandable. CS ECHO is my way of turning personal experiences into something meaningful for others.
If I’ve learned anything, it’s that strength often whispers. And when enough whispers come together, they become an echo – one that can change how rare disease is seen, understood, and lived.
Through every story shared, every voice heard and every piece of knowledge passed on, I believe we can make real difference. CS ECHO is not just an initiative – it’s a promise that patients can be educators, that awareness is powerful, and that rare shouldn’t mean invisible.
So, let’s keep echoing
Let’s make rare visible.
About the Author: Salima, a woman with Cowden Syndrome has started to blog on social media as CS ECHO — a digital initiative bringing light to the world of Cowden by sharing educational content in English, Arabic and French, connecting with patients and healthcare professionals. Connect with her on X and Instagram.
