My name is Kay, I am 23.. Nearly 24 and have lived with Stargardt’s for the past seven years (you can read more about my Stargardt’s Story on the Kayley’s Story page on this site).  I am from Warrington, England.

I put this blog together for a number of reasons!

The list seems endless now I come to think of it ..
But just a few ..

  •  To meet others with this condition
  • To be ears for anybody young, old, girl, boy, family members of anyone that’s going through this too…
  • To swap stories
  • To learn of how everyone is doing
  • To inspire
  • To cry (hopefully not)
  • To laugh
  • To share any info of possible treatment/info/tips in general.

I am the only member of my family with Stargardt’s.

I feel it is so Important to meet others with the same condition..

Through a mutual friend I am now part of a macular support group where we meet every six weeks in Manchester…

I can’t tell you how great it was to meet others with the same condition as me, for relating stories, problems etc ..  It made me feel so comfortable with who I am and a relief as I am not on my own! even just talking to a lady called Michelle before the first support group meeting I couldn’t believe that we had the same condition!!

I was overwhelmed and found it hard to believe there was others with the same condition as me,as the last six years I thought I was on my own!!!

In fact I met a working doctor, a maths teacher and lots of other lovely inspiring people with stargardts disease or other macular disease resulting in losing centeral vision.

So please if you want to talk do not hesitate to contact me as I would love to hear from you.



1. Kayley Rose Johnson (personal account)
2. Kayley Rose (my music page)
3. Kayley Rose Artist (artist page)


2 Responses to “About”

  1. Caelin September 24, 2012 at 12:21 am #

    You are a beautiful & amazing person.
    Your experiences have been so close to my story!

    I am almost 25 and have been living with this disease since I was 14.
    Everything you are writing about speaks to me and it feels so amazing to be able to relate to someone else that has the same experiences.

    Keep on keepin’ on girly, I will definitely be lee[ing up with your blog.
    Love it.

    • kayleyrose October 27, 2012 at 10:31 am #

      Aw thankyou 🙂
      Where are you from??
      I don’t know anyone my age with stargardts! It’s relieving knowing their are others out there!
      I think I saw a link to your blog.. I’ll go nit… Feel free to add me on fb or anything for a chat :DXxx

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