A A A Accessibility A A A A
Monday, 03 November 2014 00:00

Glendalough Trail - 1 November 2014

Written by  Deb Sheffernan
Rate this item
(10 votes)

Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.

It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.

Read 21630 times
More in this category: « Molly and Me Coming Out »

 

Recent Blogs

The Reality of Usher Syndrome

The Reality of Usher Syndrome

Well folks today so far for me has been a real rollercoaster of emotions. To be honest I’m usually very straight forward and generally a get up and go sort of...

Read more...

Smart Hearing the Catalyst to my Acc…

Smart Hearing the Catalyst to my Accessibility Toolkit

Having Usher Syndrome is a rollercoaster of emotions as your vision ebbs away. Going blind is all consuming so much so we almost lose sight of the real importance of access...

Read more...

A Decade of Progress

A Decade of Progress

Well it’s the year of 2020 everyone!  It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that...

Read more...

Ultimately we can all be winners

Ultimately we can all be winners

This year saw me nominated for three awards, Young Digital Leader for Digital Leaders for the second time (Too old for that one again) Positive Role Model for Disability, National...

Read more...

Virgin Train #Fail

We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:   I travelled from Maidenhead to London Euston to catch a train...

Read more...

Helen diagnosis 'I felt my world fel…

Helen diagnosis 'I felt my world fell apart'

My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year.  It...

Read more...

Olivia's Usher Life - Last few month…

Olivia's Usher Life - Last few months of emotions

Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to...

Read more...

Where did our journey with Usher Syn…

Where did our journey with Usher Syndrome begin?

Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue...

Read more...

The evolution changing Usher Syndrom…

The evolution changing Usher Syndrome

Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.  It remains a condition without a cure. There are variations in level of deafness, in level of...

Read more...

Whispers in the Dark

Whispers in the Dark

It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant...

Read more...