Katie's Journey

My Stargardt's was detected in June 2017 completely out of the blue at a routine eye appointment that I attended every 2 years.

A much needed visit

I didn’t ever really have much of a reason to go to the opticians. My mum had just taken me regularly throughout my childhood and I went when I received the reminder letter through the post when the check-up was due. This time though, I had noticed that things in the distance seemed blurrier and that for a while now I had been closing one eye to read credit card numbers easier as I had slight double vision, so I thought I would mention these as I was probably due for some glasses now that I was in my thirties.

Growing concerns

I really didn’t think anything of it as the optician did extra checks on my eyes and then told me he was photographing the backs of my eyes to view more in-depth on his computer. It was only when he called me to look at the images that I realized something was very wrong. He pointed to a tiny little spot on my retina that had lots of black flecks around it and I just remember him telling me that was my macula and the black spots shouldn’t be there and they were in the other eye too. That was the moment my life changed in an instant and I walked out, urgent referral-letter to my local hospital in my hand, in floods of tears.

No family history of Stargardt

I decided, that afternoon, that I couldn’t wait for the referral and I decided to go with my mum to eye casualty. I had several ophthalmologists look at the backs of my eyes, but nobody knew what it was. All of the nurses kept asking is if we had anything genetic in our family, but to my knowledge, the rest of my family had great vision, even my 83-year-old granddad.

Fear of vision loss

Because everyone was so unsure of what was going on, I got booked in for an emergency appointment three days later with an eye specialist at the hospital. I remember those three days so clearly. I just didn’t sleep at all, I was crying and constantly shaking, I was in so much shock and scared about how much vision I would lose. To me, blindness meant blackness and I was terrified of this happening to me.

Fluorescein angiogram

Once at the hospital, I had to have a fluorescein angiogram, which is fluorescent yellow dye put into a cannula in your hand that goes into your bloodstream and picks up the damage at the back of the retina and highlights it. Someone then takes camera work of your eye for the specialist. This was done in the hopes that he could give me some diagnosis.

Just diagnosed with macular degeneration

Four hours into my appointment and a lot of tests later, the specialist called me into his office, sat me down and told me he is almost certain I have Stargardt's, but that he was sending me to Moorfields in London to have genetic testing and a firm diagnosis. My eyes filled up and I felt very scared. In four days I had gone from thinking that I just needed glasses, to having an incurable genetic disease at 31.

Coping with sudden vision loss

A diagnosis like this is very hard to get your head around. I appreciate that so many others have had to wait so long for a diagnosis, but when it is out of the blue and totally unexpected it does make you go into complete shock.

It gets better

Two years on from the day of my optician's appointment and I just want anyone reading this who is newly diagnosed, to know that after the shock, life does get easier and I am learning to accept my new future. Sometimes a decline in vision knocks me back and I get scared and overthink things, but generally, I have gotten on with my life and learned to appreciate every little thing I can still see. I stay positive thinking that I will retain a good portion of useful side vision.

Finding positivity in vision loss

I have found it so worthwhile connecting with others going through the same thing, as they are the people who will truly understand what you are going through. I also find blogging is almost like therapy, as I can get my thoughts and feelings down too. Having been diagnosed with this at a young age, I just want to make the best of the life I have and in a lot of ways, Stargardt's has changed me for the better as I now live for the moment and realize the important things in life, travel more, and appreciate the importance of daily memory making.

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