Recently, Machteld Cossee told us her story at TedxBreda. Machteld is ambassador of Ushersyndroom.nl and gave an impressive presentation about her life with Usher Syndrome: ‘What you see is not always what it is’. By means of ‘Usher glasses’ and earplugs she made the audience experience what Usher Syndrome is and its impact on everyday life. With this TedTalk Machteld managed to reach a large audience again to make this rare disease Usher Syndrome better known and so build up more understanding for this invisible disorder.
Machteld Cossee had already been presented before in the documentary made by Hetty Nietsch: ‘The Small World of Machteld Cossee’. This documentary was broadcast by the VARA on NPO2 on 9 February 2015. As a documentary maker, Hetty Nietsch followed Machteld for 6 years in order to give the viewer a look into the life of someone suffering from Usher Syndrome and to show what impact it has on the lives of the patient as well as of partners, parents and other people around. This impressive documentary was also the starting signal for the Ushersyndroom.nl campaign.
Sword of Damocles
As ambassador of Ushersyndroom.nl, Machteld Cossee wanted to make Usher Syndrome better known and ask for understanding for people who have to live with it. They live a life in which they slowly loose both hearing and eyesight and may ultimately become deafblind.
The broadcast of the documentary ‘The small world of Machteld Cossee’ stirred up the feelings of many people. The film showed a woman who is perfectly all right at first sight, but who lives with a Sword of Damocles of slowly loosing more and more of both her hearing and eyesight. Until she will finally be completely deafblind.
Machteld spoke to a full house at TedxBreda on 5 November and asked the audience to imagine how strange it is when you greet someone by holding out your hand and it is not accepted. Or imagine that you call someone and this person does not respond. On the outside there is nothing to see and still it is very strange when someone reacts like this. In her TedTalk Machteld made us experience that we do not know what it really is like. With this Machteld accomplished her mission to touch people. Hearing little and also being forced to look at the surrounding world through a very narrow tunnel is frightening to a lot of people and difficult to imagine too. The possibilities to compensate are lost and it is a lifelong process of dealing with loss and adaptation. This is really hard to imagine for someone who can see and hear well.
400,000 people in the world suffer from the rare Usher Syndrome disorder. So far, nothing can be done about this, but there is some hope now. Developments are going on that may enable scientists to stop further deterioration of both hearing and eyesight.
As ambassador of Ushersyndroom.nl, Machteld hopes that more knowledge and understanding about Usher Syndrome will raise more money for research into these developments.
Do you want to support these developments? Donate here
Do you want to watch the documentary ‘The Small World of Machteld Cossee’? Go to programma gemist
Watch and listen to the TedTalk of Machteld Cossee below. (the English and Dutch subtitling is being worked on at this moment)