'One minute I just thought I'd need glasses, the next I'm going blind'

Posted: Thursday 05 July 2018

Sarah was 28 when she first experienced any trouble with her eyesight. She was finding it difficult to see in the evenings, especially when she was driving. She booked herself an eye test, assuming she'd probably need glasses. 

However, at the appointment she was urgently referred to hospital where she was told her sight was too bad for her to drive herself home.  

"I had a few tests and went back for my results alone as I didn't think it would be much to worry about," she said.  

Sarah, who had recently become a mum and had a six-month-old boy at home, was diagnosed with Stargardt disease, a juvenile macular dystrophy.  

"I had never heard of it," she said. "The consultant tried to explain but all I heard were the words 'blind' and 'no cure'. It was all a blur. I was advised not to drive home, so I had to ring my now husband who came to collect me with my sister. . 

"I went home and told my parents and in laws who were all devastated. I felt confused, one minute I just thought I'd need glasses, the next I'm going blind. 

"I felt angry, scared and hopeless. All of this was out of my control. I was frightened to death that I wouldn't see my little boy grow up."  

Three years later Sarah was registered as severely sight impaired.  

"I started to notice changes about two years after diagnosis. I found I couldn't see people's faces properly and that reading was hard as the words were distorted in my central vision, mainly in my right eye.  

"Nowadays I can hardly recognise anyone unless I see them often. I can tell who they are by the sound of their voice or their silhouette and their body language as they walk towards me. Other times I'm not sure who people are until they are extremely close, which can sometimes be embarrassing."  

Sarah, who is now 36, added: "Each day is a struggle, but I have my beautiful family and fantastic friends who are so supportive.  

"I even got to see my son's first sports day which I never thought I would. I've even seen him score countless goals in the many, many football matches I've watched, even though I have to kit him out in bright boots so I can find him on the pitch.  But, who cares. I see him in my own way and for that I am so very grateful. I have a feeling things can only get better especially with the support I have. 

"I just manage the best I can with what I have been dealt and I always tell myself there is always someone out there worse off than me."  

Sarah is now a patient at Moorfields Eye Hospital and is taking part in a research project looking into genetic conditions.  

She said: "For once in eight years I am hopeful that one day there will be a cure. I am grateful that I am able to take part in the research of this disease."  

Find out more about research the Macular Society is funding into macular disease