I was 16 when I was diagnosed for Usher Syndrome type 2A, just like my brother Marc.
With an enormous drive to always see possibilities I fully enjoy the large and small moments of happiness of life with my husband and our two beautiful daughters.
The remark from a physician that I would not be of value for society strengthened my urge to show that Usher Syndrome has also given me unique qualities. I completed two studies at higher professional education level and discovered that I could make my personal story work for me and used it as an extra strength in my work.
After having worked in the areas of HR, communication and events organisation, I am now making my dream of being an independent entrepreneur come true. I bundle my knowledge, vision and personal life story in tailor-made lectures and leadership sessions.

With my story I inspire professionals, entrepreneurs, managers and employees how to be resilient and flexible in times of change:
As Ambassador of the Stichting Ushersyndroom, I regularly share my story in the media, such as the AD, RTL Late Night, Overwinnaars and various podcasts ( and I bring the foundation to the attention of my audience every lecture again. I am always looking for possibilities to make the Stichting Ushersyndroom more widely known and to acquire donations for financing hopeful scientific research. Together we will make our dream of not becoming deaf and blind come true!


My name is Machteld Cossee and I live in Haarlem together with my two children. I suffer from Usher Syndrome, but despite this I am a sportive person. I run, do yoga, ski, tandem (race) cycle and walk. Additionally, I love cooking, reading and I always enjoy the company of friends. I also am a lifestyle coach with Allemaal Vitaal. (

On Monday 9 February 2015 the film ‘The Small World of Machteld Cossee’ was released. See ‘The small world of Machteld Cossee

In the autumn of 2015, I held a TedTalk in Breda titled ‘What you see is not always what it is’. After this I have held lectures about living with Usher Syndrome for various organisations/fairs/meetings.

The news that there are hopeful developments in a treatment for Usher Syndrome strengthens my commitment as Ambassador for the Stichting Ushersyndroom. I do this by supporting various projects for the foundation. I also hope to make all Ushers (and people involved) enthusiastic to make a contribution to the Usher Syndrome: for and through Ushers!