Self

Nine years and nine months: that's how long it took Cécile Togni and her partner Benjamin to finally fulfill their dream of having a child. During all those years, she endured intense physical suffering, put up with medical abuse, fought against the ineffectiveness of misdiagnoses about her infertility, collapsed and got back up again and again in the face of repeated failures, without ever losing her determination.
The Invisible Illness is an in-depth study on life with Endometriosis. Endometriosis is a disease where tissue similar to uterine lining grows in other parts of the body causing many issues such as intense pain, fertility complications and organ dysfunction. It isn’t a unique illness. In fact, endo affects one in nine Australian women - and it’s a disease most people have never heard of.

‘Voices from the Shadows’ shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011, by the brother and mother of an ME patient in the UK. It shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections. A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occur.

Lotte (18) and Roos (16) are sisters and both have Usher syndrome. That means they will soon become deaf and blind. It is not known how fast that will go, but they already see and hear a lot worse than their peers. How do these two high-spirited girls deal with their development into adulthood, while the time bomb of deafness and blindness ticks inexorably? They are not deterred from getting the most out of life: Lotte is studying to become a photographer and Roos is passing her final exams. At the same time, they also want to do a few things before it is too late, such as seeing the Northern Lights with their own eyes. Director Kim Smeekes followed Lotte and Roos for the film for two years.