During December of 2017 the School Nurse during normal screening detected that Erin's vision particularly in her right eye was not as it should be. During the Opticians appointment he spotted a lesion on her Macular. There was us at the time thinking maybe she just needed glasses... but no, so off we went waiting for a Hospital referral.

On 23rd January 2018 we received the news from Erin's (now) consultant that she had something called Best Disease. The news came from out the blue and was not a something that we had even heard of.

Best disease is an inherited form of macular degeneration. It affects the macular, the central part of the retina, and is characterized by a loss of central vision, as well as the ability to perceive colours and details. Best disease is genetically passed through families by the autosomal dominant pattern of inheritance. In many individuals with Best disease, the cyst eventually ruptures. Fluid and yellow deposits from the ruptured cyst spread throughout the macular. At this point the macular has a scrambled egg appearance. Once the cyst ruptures, the macular and the RPE begin to atrophy (degenerate) causing further vision loss

3 Days later Erin underwent the 1st of 2 operations (the second in February) to inject a medicine called Avastin directly into the macular on each eye. This has helped to breakdown the build up of fluid to stop the rupturing, which impairs the central vision, and helping with the structure of the macular. So far she has been very fortunate that these 2 operations along with wearing a eye patch for 4 months has had good result. However the fluid will build up again over time. Just how long will depend on Erin's own eyes. On top of the operations she has had countless checkups mainly involving having her eyes dilated and lots of brights lights shone at her to detect changes in her eye structure. Having endured just 1 round of these myself I really know how horrid they are. 

We are walking for Moorfields to help raise funds to support further research in to treatments as currently there is no cure. Marvellous things are happening with STEM cells but it is still very much in its infancy. If  you are able to support Erin and Jack in their efforts to raise funds and awareness it would be incredible. 

If you would like to know more...  www.rnib.org.uk/eye-health/eye-conditions/best-disease-vitelliform-macular-degeneration  they explain things much better than me.

Eye to Eye raises funds for pioneering research into eye disorders. We aim to raise over £150,000 towards areas of eye research such as glaucoma, the leading cause of irreversible blindness worldwide, and age-related macular degeneration, the main cause of blindness in adults aged over 60 in the western world. In the five years since Eye to Eye began, donations raised have helped support vital research projects including studies exploring the genetics of keratoconus and the impact of diabetic retinopathy on the structure and function of the eye.