Liliana Haefliger

One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when I drank wine, but also when I was tired mentally or physically. After the Basel University Hospital in Switzerland tested me negative for all the more common neurological illnesses (and after two brain scans revealed no tumor), it was concluded that I had had a long suppressed squint and needed surgery. This did the trick — but after three months my double vision returned, worse than before, so another operation followed — with no result at all.

About two years later, I started to feel dizzy and unsteady on my feet, and since the the doctors couldn’t figure out what was wrong, I was sent to a psychiatrist. That made me hopeful… I was going through menopause and hoped that my problem was simply psychosomatic. Fortunately, the psychiatrist had studied and worked at the university clinic in Munich and knew of a specialist for movement disorders there. After three days of tests, the diagnosis was some unknown form of SCA, but definitely untreatable and incurable.

A couple of months later, I fell into a deep depression but kept working as well as I could as my psychiatrist had advised. Around that time, my mother, who had been complaining for several years that she felt as if she was drunk whenever she was not sitting or lying down, started to have double vision. That’s when it dawned on me that I had inherited the disorder.

Encouraged by the NAF newsletters last year, I paid for the latest in genetic testing in Germany, which revealed that I suffer from SCA27B, and subsequently asked my Swiss neurologist to refer me to the university clinic in Munich, where I had been diagnosed in 2007. After a day of testing, I was told I could try Fampyra, a medication used for MS patients. As its use is not approved for the treatment of SCA, I have to pay for the drug out of my own pocket. During the first five days under Fampyra, my symptoms worsened dramatically, but on day six my double vision virtually disappeared, and on day 7 I realized I could walk much faster again. Although I’m only taking half the recommended dose, I only see double in the distance when I‘m tired, stressed or ill (but can still only read with one eye shut), and my balance has clearly improved. However, my heart arrhythmia has unfortunately increased, which is a frequent side-effect of Fampyra and might eventually prevent me from continuing with the treatment.