The story of Inês
End of February 2006, I started feeling my eyes a bit itchy and in a few hours the itchyness was almost unbearable. The doctor prescribed Prednisone eye drops, which cured the «conjonctivitis».
The 3rd March , as I woke up, I started having a vertigo crisis, nausea, balance issues and noticed I couldn’t hear well from my right ear – ironically, in the World Hearing Day!
I did several medical exams, started taking oral Prednisone and things started to be better but, as soon I stopped the steroids, the symptoms came back, at first very mild, then progressing quickly.
During several months I had different appointments with doctors from different specialities, no one knew what I had. I moved back to my parent’s house, as I was very weak, could barely walk and the hearing loss was progressing.
One day I got the chance of getting an appointment with an Ent, in the biggest hospital of my country, who listened to my story.
Suddenly I remembered the conjonctivis and told him about it. This was the turning point which led to the diagnosis: this Ent had had the first patient of Cogan’s Syndrome in my country, some years before, and he recognised the two main symptoms of this rare disease: the sudden hearing loss (and the vestibular issues) and the eye’s affection (an intertstitial keratitis).
It took me 8 years for the disease to stabilise,with the right treatment (Prednisone and an immunossupressant), one year after I got my cochlear implant.
My life changed dramatically, I was 42 at the onset, I had to retire – I was a teacher and could no longer hear my students, nor had the energy to work so many hours.
Today I feel so much better, I can hear again, my balance improved a lot, for some years I have had no eye’s issues and I adapted to my new self and my new life.
To those who have Cogan’s Syndrome, I tell you: there is hope, things do get better with time. Finding doctors who listen to you and who are willing to learn about Cogan’s Syndrome might be the key!