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I was 27 when I first experienced any trouble with my eyesight. I was finding it difficult to see in the evenings, especially when driving. I booked myself an eye test, assuming I'd probably need glasses.

However, at the appointment I was urgently referred to hospital, over the next few weeks I had several tests and went back for my results on 31st May 2010 where I was diagnosed with Stargardt disease, a juvenile macular dystrophy and I was told my sight was too bad for me to drive myself home. 

Stargardt disease is very rare and affects only 1 in 8-10,000. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.The macula is responsible for sharp central vision — for tasks like reading, watching television, and looking at faces. THERE IS CURRENTLY NO CURE AND CANNOT BE CORRECTED WITH GLASSES OR CONTACTS

A doctor looking at the retina of a person with Stargardt disease will see characteristic yellowish flecks in and under the macula. The flecks might extend outward in a ring-like fashion.The flecks are deposits of lipofuscin, a fatty byproduct of normal cell activity. In Stargardt disease, lipofuscin accumulates abnormally causing loss of central vision

I had never even heard of it, The consultant tried to explain but all I heard were the words 'blind'"and 'no cure'. It was all a blur.

I went home and told my parents and in laws who were all devastated. I felt so 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 if my control. I was frightened to death that I wouldn't see my little boy grow up

Three years later I 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.

Each day is a struggle, but I have my beautiful family and fantastic friends who are so supportive.

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

I am now a patient at Moorfields Eye Hospital and i'm taking part in a research project looking into genetic conditions. 

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 BUT in order to find a cure we need funds so PLEASE donate what you can, even if it is a pound. Every penny is greatly appreciated 

Please watch the video link below which will make you understand more about how this affects me.

Please help me to see my son grow up. 

Thank you

Sarah 

https://m.youtube.com/watch?feature=youtu.be&v=JfGlf_jlWeI

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