Lifestyle Vision

A Roundup of my 2018

December 30, 2018

As 2018 draws to an end, it has made me reflect on the year that I have had. When I was diagnosed with Stargardts in 2017, for a good few months it honestly felt like someone had ended my life. I was lost, confused and scared for much of the rest of that year following my diagnosis and I was consumed with the feeling of ‘why me’. I was grateful when my little boy suggested that we do something to help my condition in the only way we could have, and that was to raise money for Stargardts, so at the end of 2017 we started up a just giving page and signed up for the eye to eye walk in London ran by Moorfields eye charity. Throwing myself into that and having so much support from others going in to 2018, made a big difference to my emotional state. Instead of feeling useless by something I couldn’t change, I felt like I was doing something to help myself and for the first time since my diagnosis, I felt my spirits lift and felt motivated.

My husband and son walking in London.
London 2018

After the success of our eye to eye walk and raising over £2000 for Stargardts, I decided that because my condition was so rare and very little people knew what it was, I was going to try and raise more awareness. In May 2018, I started up an Instagram account to bring more attention to juvenile vision loss. Instagram proved to be an exceptional support network for me, and I have met some amazing people on it this year who I speak to regularly and have become my firm friends. It is amazing how complete strangers can be so much more supportive than some friends and family, but that has been the case and I am so grateful to everyone who has been so kind to me.

eye 2 eye Walk March 2018
eye 2 eye Walk March 2018

For my 33rd birthday, my husband took me to lake Garda. We decided in 2018 we would see more beautiful places and my gosh, it was one of the most beautiful places I have been to and will stay in my memories forever.

Beautiful Lake Garda for my birthday
Lake Garda for my Birthday – 2018

In August I didn’t let my anxiety get the better of me and I went on my local radio to talk about Stargardts and how it affects me. I have to say I was so proud of myself for this. It may come easy to some but speaking like this live on air was one of the most terrifying things I have ever done, but I’m so glad I did it and raised more awareness. I was on such a high after the radio interview, I decided to start up a blog and my website katiesvision.co.uk was born.

At the end of August my husband took me to see Britney Spears who I have wanted to see in concert for years (she didn’t disappoint) and we went to beautiful Croatia with my mum and step dad too and had a great time, lots of laughs and pretty scenery. Another gorgeous place ticked off and more visual memories made.

Happy face time, me smiling going to see Britney Spears.
Britney Concert Day 🙂 – August 2018

I decided to start up a U.K. based support group in September for others diagnosed with Stargardts and juvenile vision loss. I decided on this as I felt so alone when I was diagnosed, I didn’t want anyone else to feel the same. I remember the first thing I did when I was told I had Stargardts was look for a support group on Facebook.

I found some but a lot were American based, so I decided it would be beneficial to have a U.K. one. I hope people who have joined have found it as useful as I have and it’s nice to know there are others out there, although I wish none of us had this.

In the October half term, my husband booked a surprise trip to Brixham for all of us which was a much-needed break and as pretty and quaint as I hoped it would be. We had a gorgeous apartment overlooking the sea and did ok with the weather!

Brixham – October 2018

Throughout the year I did a newspaper article on my support group and an article for enable magazine on my condition and helped the macular society bring more awareness to younger people with vision loss. We also had lots of lovely days out to the beach, London and got a National trust card.

Reading back on how my 2018 was, makes me feel a little emotional. It also wasn’t without its down moments. It showed me who I can rely on and who truly cares about me. I now know who is there for me and who really isn’t. I know the people who tire of me discussing Stargardts and I can see in people’s faces who just want to keep me motivated and strong. Some people tried to bring me down in 2018 at the lowest point of my life, but I carried on regardless. The thing with vision loss is, unless you have been diagnosed with it or are living it, you can’t ever truly understand how devastating and life changing it is. Some people can’t seem to understand that one minute I was ok and the next I was going blind. That’s ok, I can only help raise awareness, but I can’t eradicate ignorance as much as I would like to.

Me and my dog, happy and smiling.
Me and my Puppy

I don’t make New Year’s resolutions, I never have done, but I hope 2019 is as fulfilling as 2018 was for me. I am so grateful to all the people that lifted me out of the darkness and told me I will be ok, supported me and told me to keep going, and gave me the strength to do that, I can’t thank you all enough. The one thing I do know for 2019, is that I will be putting the same amount of effort and energy into what people put into me. I don’t have time to waste on negative energy and I will carry on raising awareness for Stargardts and vision loss until the day I am told there is a cure.

Happy new year everyone ♥️🎉 thank you for following my blog and look forward to sharing more posts with you next year xx

Christmas 2018
Christmas 2018

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  • Reply Teri December 31, 2018 at 7:24 am

    Love this! ❤️ Thank you for sharing!

    • Reply Katie January 3, 2019 at 10:06 pm

      Thank you for reading Teri 😊 x

  • Reply Linda Seavey January 2, 2019 at 5:32 pm

    My daughter has Stargardts and I am finding it quite interesting that you use such a small font. Is there a reason? When I see her on her phone or computer, she always magnifies the font, I’m wondering of maybe I am missing something or if maybe what you have is a different mutation.

    It can be a scary world to navigate, thank you for sharing!

    • Reply Katie January 3, 2019 at 10:18 pm

      Sorry to hear your daughter has stargardts too. I have late onset with foveal sparing, so small font for me is easier to work with for now, I have enlarged the font on my page slightly bigger, but I also have an accessibility plugin installed to the left hand side of the screen for text size and contrast. Also the majority of people with stargardts will have things in place such as magnifiers, screen readers or devices with already enlarged font. Hope that helps x

  • Reply Melanie January 3, 2019 at 10:21 pm

    Such a beautiful blog post and WOOOWWWW what a year Katie! I’m sure 2019 will be equally as good as 2018 (of cause with it’s ups and downs). I wish you the best of luck on your journey this year and will continue reading your blog. Go girl!

    • Reply Katie January 3, 2019 at 10:29 pm

      Thank you so much for reading and for all your support Melanie ❤️ xx

  • Reply Linda Seavey January 3, 2019 at 10:26 pm

    Thanks for sharing! Yes she does have magnifiers, and also late onset. You are doing a wonderful thing with your blog!

    • Reply Katie January 3, 2019 at 10:30 pm

      Thank you so much ❤️ that’s really kind of you to say x

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