Deborah's Glendalough Trail 2014 page

Let me tell you my story.....In March 2013, I was diagnosed with the degenerative eye disease Retinitis Pigmentosa (more commonly known as RP). Retinitis Pigmentosa causes tunnel vision, night blindness and in some cases total blindness. There is no cure. Typically a person with RP is legally blind by the time they are 40 years of age. Scarily for me that isn't that far off. Already I have lost nearly all of my peripheral vision and have night blindness. The impact on having RP is major. Along with my hearing impairment, it's even more challenging. On the day I was diagnosed with RP, I was told it could be due to Usher Syndrome. Usher Syndrome is an extremely rare genetic disease causing blindness and deafness. Genetic testing later showed that I do indeed have Usher Syndrome type 2.

The impact it had on my life thus far has been challenging to say the least. From dealing with the emotional fallout to my giving up my beloved driving. But through it all I have come to know some really amazing and inspiring people. I have come to realise what true friendship really means. My family have been fantastic and my children equally wonderful. But the biggest support came from my husband (who's also doing the trail), and without him I would seriously still be in a dark place. I'm eternally grateful to them all.

So now I feel it is time to dry the tears and get back up. I want to create awareness of this terrible and cruel disease that is Usher Syndrome. I'm doing this challenge, which I hope is the start of many, to do just that. And if you're reading this, then you are now aware of what Usher Syndrome and RP is. I will continue to do so until everyone is aware, which will then hopefully encourage more research to be done until a cure is found. I hope that you can support me on this journey by donating, sharing this or even talk to someone about it. It all really helps. All money raised is going to the Fighting Blindness which is an Irish patient-led organisation whose main ambition is to cure blindness.
Thank you x