Coping with Stargardts – a young person’s journey

Being diagnosed with a sight-threatening disease as a young person can present a whole host of challenges, particularly with social and emotional well-being.

Our clinical teams treat patients all ages and each has their own set of challenges even if they are diagnosed with the same eye condition.

We recently came across a blog written by a young person, Katie, who decided to share her experiences of being diagnosed with a sight-threatening condition that she had never heard about and has no cure. Her motivation for writing her blogs was to help others understand that the initial feelings of being “lost and alone” she felt are not uncommon and there are others who understand and willing support each other.

Katie kindly agreed to write an introduction to herself and her blog for the St Paul’s blog should a patient, their family or loved-ones want to understand vision loss from her own experiences.

Katie’s Story

My name is Katie and I was officially diagnosed with Startgardts on the 29th September of last year at the age of 32.  In the June of 2017, I went off to a routine eye appointment that I go to every 2 years and the optician couldn’t correct my vision down to 6/6. I hadn’t noticed any problems with my vision other than things right out in the distance not being as clear anymore. The optician decided to take pictures of the backs of my eyes and that’s when he discovered masses on both of my maculars.

I got an urgent referral to my local hospital and within 3 days they told me they were pretty sure it was Stargartds but they were sending me to London to have it confirmed. I waited almost 3 months for my appointment where they broke the news to me that I did in fact have Stargardts and currently there is no cure.

My world felt like it ended that day. I remember shaking and feeling physically sick, nothing could have prepared me for those words. I threw myself into fundraising straight after my diagnosis as I felt I had to do something and then in August of this year I decided to start up a blog and support group to help others going through the same thing. I remember feeling very lost and alone after my diagnosis, as I didn’t know anyone else of my age going through this and I didn’t want anyone else to feel the same way I did. I hope others with vision loss can read my blog and realise that their thoughts and feelings are normal and that life will go on even if it doesn’t feel like it at first and you are not on your own, there are others out there who get exactly how you are feeling and although life has changed, it isn’t over 💜



You can read Katie’s blog by clicking here