The story of Tanya
Three years ago during a routine eye test my optometrist noticed a hole in my retina in my right eye. I was referred to the ophthalmology department in a general hospital and was given no explanation but told I may lose my sight in my right eye. Four months ago I lost part of my sight in my right eye. I developed a large scotoma in the centre of my vision and had blurred and distorted vision. I was immediately referred to the Royal Eye Hospital in Manchester where I was diagnosed with a rare eye disease called Punctate Inner Choroidopathy (PIC). I discovered I had been living with this disease for three years but had not been diagnosed correctly.
PIC is a rare inflammatory autoimmune disease that causes lesions to develop in the choroidal and retinal layers of the eye resulting in vision loss/blindness. It mainly affects young, short-sighted women but a small percentage of men are also affected. Vision loss can be sudden and is permanent. There is no known cause for the disease and very little research has been carried out. PIC is also completely random in how it impacts those affected. Some people lose all their sight in a short period of time whilst others only have minor lesions and can go a decade without a relapse. Consequently, there is no typical prognosis. There is no cure so far and treatment is limited.
Since my diagnosis I have been treated with steroids to reduce the inflammation and my vision has improved. Coming to terms with losing my sight at age 30 has been difficult. I worry about the future and further sight loss. Fortunately the disease is only in my right eye but it is likely that the disease will progress to my left eye at some point. As I write this I’ve had a relapse and it’s back to the hospital tomorrow for more tests. It is really important to spread awareness of this disease as early diagnosis and immediate treatment it critical to prevent severe vision loss.