Kayley’s story

From the beginning! – setting the scene

On the 22.08.88, I was born..  Kayley Louise Johnson they named me ! My dad described me as a gorilla with big hands and my mum said I looked like a little rosebud!  From then on I answered to the name Kayley Rose!

I had a fantastic childhood.  We lived in a village called Burtonwood, Warrington, Cheshire (United Kingdom) and have the best memories.  I was bit of a Tom boy, I loved the outdoors and would not be seen dead in a dress.  I had a vivid imagination and loved playing with my brother Ross who is two years younger than me (Ross has perfect eyesight with glasses- thankgod – and has turned out into a fine, halairious, loving, alcoholic university, Josie loving specimen!) studying finance amd banking at the University of Reading.

We got up to lots of fun as kids..

We loved the outdoors and had a caravan in the Lake District, we went there every weekend.  Would had a curry on a Friday whislt my dad went for a ‘swift half’ (or ten) in the pub while my mum would put the curry in the oven and me and Ross would put Southpark on tv, and as kids would hope to hear “you killed kenny you *******” if we were lucky!! Haha

We went on many holidays too, I ski’d from the age of 8 and love general outdoorsy creative stuff.  I was also in the school band and played the horn from age of ten and played upto grade six, I also performed a the Royal Festival Hall and even toured around Spain!

I loved painting, dancing singing just general wannabe spice girl , slightly crazy but a hard worker.. Not the brainiest but loving and always a giver !

Anyway just setting the scene!

Early problems aged eight…

Around the age of eight I discovered problems with my eyes but instead of blindness I had the opposit problem. I could see double!  This resulted in my having to have corrective surgery on my eyes.. At the time and after two operations this problem was sorted.  I had to wear eye-glasses with a prism and after a couple of years this problem was sorted.   I vividly remember my consultant saying thatwhen I was older I’d have big problems with my eyes, but at the time I literally cast it aside.

The High School Years

 I went through high school and gave up wearin glasses as I thought it “wasn’t cool” if only geek-sheek was around in the “90s” ha!!!

I began really struggling reading the white/chalk board aged 13/14 I didn’t see it as a problem but realised my work was slacking and at parents evening I told all my teachers I would move to the front of the class as I felt I wasn’t paying enough attention etc..

I ended up walking right to the front of the class all the time and stood scribbling away at my books copying from the board… ( thinking back now everything clicks into place)…
It ended up my class mates would either read out from the board or I would try my best to copy….( at the name I didn’t see it as a problem I thought I may need glasses)

My French teacher cast me off as a “complete failure“.. I had told my mum I couldn’t see the board – never mind trying to read it in a different language!!

Developing a sense of Self-Awareness

 I was fifteen now and was really finding who I was, just a smiley, hair straightening (at the time) fun-loving girl, happy go lucky, hard working girl, who loved sports, netball. Skiing , bike riding, badminton, music etc and would get nine out of fifty on a history test ha!  Not the brightest academic but showed a flare in all creative and sports subjects !!

My personality..  I would literally talk to anybody and say hello to anybody in fact I’d always smile at everyone who walked past and lift my shoulders up for some reason! I thought to myself if they didn’t smile back at me o well! Smile at the next person!

I’d worked hard for my GCSEs and just passed them all.. I was not academic but always tried my best.. I’d spend hours colouring over my work to make it look pretty, just a shame about the content haha!!! My mum said all she could hear “was our Kay up stairs banging on the floor with that bloody blush art”

My first recollection of a serious change in vision…

I started college September 2004 …  My first recollection of something being wrong was my friends would shout me in the corridor and i had no idea who said it, I would often have to ask “who is it”.  I could hear them and make out there was someone there, but I couldn’t make out who it was..they’d just laugh thinking I was joking .. Inside I’d be thinking I really can’t see you!!

I went to the library and a friend shouted me I asked “who’s that” and my friend said “what do you mean ‘who’s that?!’”, then we just carried on our day as usual and just forgot about these things.  Later that day I nipped to the staff room to speak to my form tutor quickly and as she opened the door I remember being so shocked as it was as though her face disappeared In front of my eyes .I could see her arms and above her but her nose and eyes just went missing … I think she thought I had seen a ghost .lol

I went home and told my mum but (wrongly) we just cast it aside and continued our busy lives….

Opticians….

A letter had come through from the opticians as I hadn’t been for a check up in a while..  I went and came back with a referral to the hospital as they weren’t sure what was wrong but the optician wrote he thought I had a foreign body in my eye!

I went to my grandmas for tea and remember saying “told you so!!”.  I was almost excited that I may have this foreign body in my eye for some reason as the optician said it could be as simple as a piece of sand off a lorry I was thinking wow how did it get in and I didn’t even feel it!!

I was working part-time at Marks and Spencer, at this time as a sales assistant as I went to college. I loved attending work, meeting new people and feeling independent using the till etc .. I’d always say I’m only fifteen you know! :-)

This changed.  I started feeling extremely tired all of the time, my grandad would drop me off at work so I’d go there for tea after college now 16 and all I’d want to do is sleep! My grandma would say “this isn’t right for a young girl to be so tired..”

Hospital Tests

The hospital couldn’t tell me what was wrong..  All I knew is that my vision has gone worse..

I’d been for numerous hospital appointments and tests, seen neurologists, had brain scans , had a lumber puncture, electro diagnostic tests .. This took over a year, a year where I should have been enjoying myself as an independent teenage girl… There were no signs of any problems in the inital test results.. But my field vision tests(click when you see a light flash) showed to be very consistent.

A neurologists was adament I was just making my problem up, for attention!.. At this time all I could describe my problem was that there was a pin prick shape in my vision ..right in the middle of my right eye that looked not white not black just as if theres nothing there..and if I looked at things they would dissapear (when texting I could never find the flashing curser – I used this as an example ) ..

The doctor asked me have I any problems at college I said well , I’m going to be changing college as I want to study Art and Design at a proper college rather than sixth form and specialise in fine art and textiles… Instead of focusin on my eyes, instead, he said “well you’re clearly not happy in the college your in at the minute, so your being bullied out of the college and making this problem up for attention!”

I couldn’t believe what I was hearing, a medically trained professional ignored their field of expertise and instead accused me of making the whole thing up! just for attention!

Family support and belief!

 My my and her sister (my auntie) I wasn’t making it up and she believed me , I wasn’t the type , I wouldn’t and couldn’t even be bothered to think up a problem.. That really frustrated me. I thought I’d been telling my mum for months there’s something not right and now we go the hospital they’re not listening, the one group of people who should be interested in findging out why this was happening to me simply turned me away time after time after time.

Instead, i thought chin up and tried to just enjoy life and my dad had taught me to drive.. I got my ‘L’ plates and we went every Sunday morning on some private land.  I was always good at things you could get stuck into when using your hands.  I took to it like a duck to water, the manouvers came easy to me, parallel parking, reversing etc.  My dad filmed me driving once, encouraging me and praising me …. and also Shouting at me if I made a mistake!!

The area I practised on was only small, bu,t it seemed I did a lot of stopping and starting and was u sure of what direction I should be driving in. My dad actually said to me “are you ok, can you see?” as I’d often ask “so which way now. Are we going right here etc” again I said just needed glasses…

I was so excited and divised a plan to save up money for the insurance and how I was going to work full time at M&S over the summer hols to then turn 17 at the end of the holidays and to drive shortly after starting the new college I been accepted at. (the complete opposite of someone looking for apprarent attention through claiming to be going blind!)

Even MORE Tests

 I was still complaining of my eye problems so my mum demanded all the tests to be repeated and my consultant agreed with my mum as she said my field vision tests were too consistent for me to be making it up.  The tests were now proving that I did have a real problem.  Tests they should have looked at before calling me a liar for making it up!

I was going through numerous test taking time off college (not that I was bothered as I could hardly keep up with the work load as there was so much reading and I would miss bits out as now I wouldn’t walk up to the board in the first year of college as I started to think this was a bit weird!)

My next hospital appointmend came. I sometimes felt like I was being dragged along as though I was thinking is this a joke! They can’t find anything wrong may be it’s just the way I am. (as if the doctors were wasting my time I had it in my bain!!!) (a combination probably of being young, nieve, in-denile, oblivious and wrapped up in my teenage world!)

The Results Are In.

 I was asked to leave the room whilst the consultant spoke to my mum and dad I was literally thinking what on earth are they talking about and why did I have to leave the room?!..

I was confused but as always I just cast it aside..

After a good while of sitting in the waiting room i sat trying to text some of my friends, i was taken into a room and was told they had something to tell me.  I was told that I was going to go blind.

My consultant said to me that I had a serious problem but they didnt know what it was yet so I would have to stop driving. I remember him saying, “do not get into the car because you’re never going to be able to drive” my consultant said – without any compassion.   I was in denial.  I was thinking I will drive and don’t be silly.. You’ve got it wrong I’ll be fine :)

I was simply handed a bunch of leaflets on guide dogs and how to register yourself blind. I actually was very blasay about the whole thing in-fact as I was in-denile.

I was literally thinking what are they on about? Surely they’ve got it wrong?! I seriously didn’t believe them and was thinking Nah it’s not me..

One day I was rushed into hospital, was given a wheel chair on arrival I was literally thinking what is happening here?! I was put on a drip of steriods for a week to try and bring back my eyesight that had gone in my right eye.

At this point with both eyes I could read probably to the third line down pf the bog standard eye chart.. In just one week my eyes rapidly seem to change.. My left eye was now affected.

I was fine in the hospital my friends had sent me cards and stuff to do.  Some friends had asked to come and see me.. I said to my mum there’s no point because there’s nothing wrong.  Inside it just wasn’t sinking in – I carried on as if I was ok. I think because at the time the blind spot was very small I thought the hospital would make it better and I didn’t want any fuss.

The blind spots in my eyes were growing bigger as time went on

Friends rang me and asked Kay,is it true your going blind?!” and in-denial I would answer “no why re you asking me that??”

I clearly wasn’t listening to anything Anybody told me and just kept telling myself I’ll be ok.

I came out of hospital and continued my life…..

I’d look up to look down I’d tell people so I could see them. At first I could look about a metre up above their head so that the blind spot was well above them so with my lower vision I could make out their face.

I did begin to struggle with simple things such as reading, recognising faces, making eye contact etc.   I literally was putting my face to the till at Marks and Spencer to read the price and eventually as my eyes got worse I just couldnt manage it anymore :-(

Rude customers would openly (and often loudly) say “are you blind or something?!” and it got both tedius and very upsetting.  I felt a burden to my colleagues as I’d always have to have help whether it be for a phone number, to check what job I was meant to be doing on that hour, getting to work, the list goes on.

I felt I couldn’t cope anymore as i couldnt do these jobs perfectly as well as just simple tasks.. Passing people I didn’t recognise, in the street and it would upset me.. I’d feel useless and insecure as once I’d walk with a huge smile on my face now I was concentrating and thinking who’s this?, do I know them? Am I gonna look stupid if I say hi and I don’t?!

I had lots of support off collegues but didn’t know anything about support programs such access to work and how they can get tills in big fonts etc ..

I was though excelling in my art class.  It was the best thing I ever did.  It was a fresh start at a difficult time.

Reading bus numbers, crossing roads making new friends trying to explain the problem that I can see but I can’t recognise you or I can’t read or I can’t drive or I can’t read your texts (“but you wont catch it” I’d say) ….I found myself always trying to justify myself.

It Seemed no problem To anybody, they all accepted me for who I am.  Everyone knew me for who I was now and not what I was before … (this bothered me as before I was so outgoing and now I was not as independent and couldn’t work things out for myself)

I began learning tricks of how to remember people.. (it doesn’t always work haha I have confused people many of times but worth a go.. I’d remember people’s walks, where they would sit, their style of clothes, colour of their hair, speech, the bag they have ….. God help me if they had a haircut or dyed there hair would not have a clue!!!

I see my eyes as a jigsaw puzzle a very strange and orkward one….

Stargardt’s and College

 Shortly after I was being diagnosed with Stargardts and a couple of moths after walking into a college where I didn’t know anybody was rather daunting but I asked people where to go and once I’ve initially discovered the place I need to be I’m fine navigating it again I have a good sense of direction however ironic that may be!!

I completed college got distinctions made some amazing friends. Got a grade B in textiles and went on t do a fine art foundation course still at the college.. I had such fun here, this time in my life made me who I am today, I broke the mold, thought for myself, had my own ideas.

There are no rights or wrongs in art I feel this is and was a vital part of my heeling as I had a sense of achievement and got lost in my work and forgot about my eyes deteriorating.  I’d say to my teacher “I’m sorry I cant see that” and she’d give me the object and say “draw what you can see”.

I had a couple of upsets.  I have a very positive outlook but say once every couple of months I’d have an out burst of why me, what the hell! No one understands and once my psycho attack was out I’d burst into laughter and relief and hug my mum and say I was sorry for crying..

It just annoyed me the first thing you do in a morning is open your eyes, but for me this become different.  Every morning I open my eyes and have a piece missing, a blind bit would be staring me in the face I’d often wish it would go away and not always be there causing me problems!

At this time I didn’t know you could get soft ware to zoom on computers etc so that was so stressful I was trying to apply for University (not to mention thinking how would I cope when there) but literally couldn’t see the computer my teachers had high hopes for me and were so fantastic to me and had a lot of patience and understanding.  They knew about my problem and for the first year of college it was still not entirely understood as to what disease I actually had…..
My teachers said I used the strangest colours together and of anything ott may help my art work..

Enter Sunglasses

 I hated wearing sunglasses every minute of the day as initially I’d never worn sun glass in England never mind on a cloudy morning in September.. I felt as if people were looking at me but no one was bothered, it was just because I knew I had to wear them.. I love them now I always wear them!!!! I must have lost and bought around one hundred pairs of sunglasses over the last few years!  HA.

I only have three pairs on the go now!

If there good enough for Victoria beckham then there good enough for us!!!! (at first I thought you could only buy the designer brands as they were best but on the inside of the glasses it’s numbered one to four, one being the weakest protection four being the best… Fours quite hard to find but they’re out there… We must wear sunglasses as the UV light deteriorates our vision.. Wearing a floppy hat in summer is essential to me and keeps the sun out!

Onwards and Upwards

 I have not let Stargardts stop me.  I have lost my central vision after having Stargardts for years, but I am also a professional singer, did X-factor, have a band, sing at weddings, am an artist, and teach young children to sing!

For my 18th birthday friends knew I loved singing and so they bought me time at the recording studio.. I recorded a couple of songs and ended up selling the cd for st Paul’s eye unit Liverpool where I go for check ups.. You can read more about that here and also here too

I raised £1,500, I’d just turned 19 and got my first singing gig in the local pub.. And never looked back.

I had singing lesson twice a week for a number of years, I was in a duet and played small gigs for a few years and gained lots of experience.

I the did X-Factor in 2009 and reached the last twelve girls, below are a few pictures of me singing for the Judges :-)


Today I have had two residencies in local lovely wine bars and am now in a band called “The Groove Hustlers”, below are our websites:

I now gig with band, and I also teach primary school kids singing “glee club” sing at weddings, parties, corporate events.

I paint most days.. I always said whe I paint I forget about everything .. I do. Love it and I didn’t know that there its a therapy “art therapy” so it’s true it helps,me honestly give it a go. I paint with my hands and make a right mess, it’s something to focus on have fun with, create something , enjoy and have fun with it!!!

Overall from my biog .. If there’s any I want you to read, this is it…

I’ve written honestly about me and my experiences, but one thing to remember; Think about the positive!, at least we still have some peripheral vision!  Think of everything we can (still) see!  Think of all the things we can do!!! (take care though, just extra vigilant like skiing, for me I go early in the morning when it’s quiet and follow people in stages )

Whatever you want to do.. Do it!.. It’s possible!.. We can:

  • Walk
  • Talk
  • Smile
  • Laugh
  • Hug
  • Love
  • Shop
  • Run
  • Cart-wheel
  • Shout
  • Scream
  • Cry
  • Pick flowers
  • Pick our nose
  • Ride a bike (maybe wear bright yellow builder jacket and helmet :p)..
  • The list is endless…

If you need help out shopping for sizes, just ask! if the shop assistant is rude, just ignore them and continue your day and have a pasty!! Haha .. Be happy.

Be brave, be positive, and one day, hopefully, there will be a cure I hope for us all…

I have passion, I have the will to succeed.

I would have never had the confidence to stand up I in front of a crowd if I didn’t have stargardts disease, now I can’t see them, it’s fine!!

I would have never expressed on a canvas and whacked a load of paint everywhere .. I probably would have just followed the crowd… So for you too, just be you; embrace that your different and it’s ok to have a shit day, she’d a tear or email me with a rant of how annoying it is!!

Please, don’t be scared.

When I was a diagnosed I was told that stargardts is a life changing disease, But with adaptations I could leave a pretty normal life.  And I do!

I may now be registered blind but I have a fantastic life.  My beautiful family, my boyfriend, my friends not forgetting Yoko my dog!!

I love to dress up and drink Mohitos and wear huge high heels which you would think could be lethal but you know, I’m careful and my friends watch out for me :-)

I do believe every cloud has a silver lining and every day, week or month when my peepers decide to change and go worse, I just breathe in crack on, I don’t let it worry me as what’s the point?? I can’t change it…

Loosing Sight of the Future

 Of course I have thought about the future.. Having kids, how will I cope? Not be able to run around and driving after my kids as my mum did for me.. Not being able to spot my child when picking him her up from school, there is so much uncertainty.

A lady I met at the local support group i attend  said “your kids become your eyes and naturally they come to you”.

I am self employed so I am very lucky that I am creative but I know others who are academic and have assistants to help them at work.

My eyes now are still deteriorating I’d say my blind spot when I loom into the distance is pretty big ..  I am so called colour blind too but I’m defo not hahaha!
I find myself sometimes gazing into my own vision as even though I’m blind what I see is crackers all the wiggly lines and confusion,

(I avoid looking into the blind spot when I’m busy as obviously there’s nothing there so I dodge it, hold thing closer to my face, use magnifiers, ask others to read for me).

I have in the last few months moved in with Gaz my boyfriend, we have a puppy called  Yoko, she’s a Basset Hound and it’s really given me what I needed.. Focus, some independence,. I’m even learning to cook and have made some mega meals if I don’t say so myself !! And learnt just basic Cinderella chores washing, cleaning etc ! It’s all going great..

I’d just like to thank Gaz, my Mum, Dad and Ross, and my friends for being so amazing with me aad loving me through all of the tears and the fun. All the lifts you give me to work and everywhere else I go and all the happiness you give me.   I could have never succeeded so far with out you guys and I love you all so much. Thank You XXXXXXX

Thanks Gaz for making this for all us Stargardt’s guys out there and hopefully this will help them and make their lives a little easier with your tips Xxxxxxxx

I look forward to the future and I hope you do too with me, I’ve learnt how to blog now (vaguely) so I’ll post some things of what goes on in my life!

Well, I think I have given a pretty detailed account, any questions dont hesitate to ask :-)

Peace everybody and hope this helps.

If you need any technical support or a serious Convo me and Gaz are here Xxxxxxxx or any parents wanting to speak with my mum just give me a bell… We’re still going through it now x

19 Responses to “Kayley’s story”

  1. Ali Ambrose July 10, 2012 at 10:01 pm #

    Kayley…you are absolutely amazing!

    So warm, so full of energy, so talented. I am in awe of you!

    You have done a wonderful thing in writing this blog. I’m sure it will help and encourage others.

    I can’t find the words to tell just how great you are…one of the most beautiful, warm, fun and loving people I have ever known.

    Brilliant memories of La Rosiere! ;-)

    With heaps of love and admiration, Ali Ambrose xxxxx

    • kayleyrose July 10, 2012 at 11:16 pm #

      Awww thanks AliXxx I so hope it helps others… This is the type of thing I wanted to see when I was first diagnosed.. Someone to relate to etc!
      Hope you are happy and well, when my band are next in fridsham I will message you if your free come and have a drink with us!!
      Lots of loveXxxxxx

  2. iangoldsmith July 11, 2012 at 10:04 pm #

    Thanks for sharing your story. I stopped by because I liked your art, but your story is brilliant! It was like a good book, I couldn’t put it down until I’d read the whole thing… that’s unusual for me!
    Brilliant!

  3. Tracey Johnson July 14, 2012 at 1:21 pm #

    I am Tracey the very proud mum of Kayley.

    Kayley has not let SD stop her from doing the things she really wants to do (apart from driving). Yes, there have been times when she has been very down, even frightened, however, her strengh and determination to succed through hard work and lots of effort has seen her bloom.

    I have always know she is a Rose from the min she was born. I can remember when Kayley first started having problems, going to the hospital 2-3 times a week with no conclusion and yes I was scared. I s till am in some ways, it is still the last thing I think about every day, how could Kay be so unlucky to get SD. However she has, we are a strong family unit and Kay has some great friends and has amazeing support from Gaz.

    Anyone who has a child/partner or friend with this condition and would like to ask me any quetions, please do not hesitate to contact me.

    xx

  4. Valerie Barnes July 19, 2012 at 8:12 pm #

    I,ve just read your story, you are amazing young lady. I wish you and your family all the luck in the world. I have a son with learning difficulties Mason, I have to fight to get the support he needs. People comment on his behaviour when he is playing up! (shouting in Asda) I feel like I have to explain his behaviour it’s so sad. You stay strong and wish you lots of happiness in the future. Xxxx

    • kayleyrose July 19, 2012 at 10:34 pm #

      Hey!!
      Aw thanks for reading and commenting!!!
      It is hard feeling you have to explain yourself and feel you’ve got to justify your actions!! I’m the same!
      How old is your son??
      xxx

      • Valerie Barnes July 20, 2012 at 8:27 pm #

        Hi, My son is 11, I,ve been fighting for help since he was two, he has a diagnosis of complex learning difficulties with severe speech and language and behaviour delay. He moves to high school in September, I got a place for him at the ASD unit St Gregory Catholic High school. Mason is so excited but I,m worried how he will cope. It’s a Fantastic school, very nurturing school which I need for Mason. He is a lovely child but he is hard work but I wouldn’t change him for the world. I,ve listened to your singing you have a amazing voice, your very talented. Take care. Xxx

  5. Brian August 10, 2012 at 2:39 pm #

    Thank you Kayley! You and my Kailey are amazing beautiful girls that share this pain in the butt disease and have the same talents. You are a inspiration to her. Again thank you and Stay Strong!!! :D

  6. Lori August 11, 2012 at 8:18 am #

    Thank you Kayley for reaching out to other people! My Beautiful niece Kailey has the same eye disease. She is thirteen and has an amazing spirit! Not to mention the fact that she also has the voice of an angel! When she sings it brings tears to my eyes… I do believe that she was also given that special gift for a reason. I hope she has read this and is inspired by your story… and that she has been given hope for a better future. One never knows…maybe we will someday see her on “American Idol” >3

    • kayleyrose August 16, 2012 at 8:17 am #

      Aw! Thankyou!!! Hope your niece is ok and doing well, Tell her to have a look at my blog or in a few years when she’s a bit older! xx

  7. Sharon October 5, 2012 at 9:02 am #

    Hi Kayley,
    My daughter Leesey was diagnosed with Stargardt’s in February 2012. She turned 11 in August this year. I’ve enjoyed reading your blog and love your positive attitude (I also follow you on Twitter, i’m ‘Smileysprite’)

    Leesey’s very shy, but I hope her confidence will grow as she gets older. She started senior school in September and loves the lessons (they enlarge all the work for her and print out everything that’s put on the board. She has a specialist teacher that comes in and tells the school what Leesey needs to help her and they’ve ordered her a Zoom Extra which sounds really cool. You just plug it in your laptop and point it at the white board and it shows everything enlarged straight onto your laptop and also gives you the option to have it read out to you. Leesey’s excited about this and thinks it’s gonna help her lots – I hope so) She’s works so hard and it’s tough to know that she’s struggling.

    She’s having a horrible time now with the other children laughing at her and making stupid comments because when she’s outside she ALWAYS wears her sunglasses, whatever the weather rain or shine. Have told the school they need to educate the children about people with certain eye conditions and the need to protect their eyes! Leesey is such a happy girl and really loves life. I think she is very brave, considering what she has to deal with. Your blog has made me feel better about things.

    I do tell Leesey not to worry about what might happen in the future, just to live for today, because you never know when it’s gonna be your last. You could be killed in a car crash tomorrow (I know I should have left the last bit out, but she found it quite funny and got what I meant :)

    I hope you continue to enjoy life and do all the things you want to do :)

    • kayleyrose October 27, 2012 at 10:47 am #

      Hey :)
      Sorry for the late reply. Hope you and leesey are well and I hope all the technology’s working out.
      Aww it kinda brings a year to my eye as I totally understand about wearing the sunglasses thing.l, people can be rude and ignorant to things they don’t know about…… There was a time when I’d go to college on the bus n people would look at me as its just cloudy outside but I just take a deep breathe and think well this is what I have to do to protect my eyes … I really do think schools should bring awarenes to disabilities and let other kids try different glasses on to show what it would be like to see like us etc and then everyone’s educated… It is difficult being the only one wearing sunglasses but you can get some really nice ones (I sometimes think people must think I’m trying to be some kind of celebrity with my sun glasses but I just laugh it off to myself!)
      My friends have joined the sunglasses crew and they also wear them so I don’t feel left out which is really nice!
      My mum is my best friend and I know she worries a lot about me too..it took me ages to have the confidence to meet others with the same problem but it would be grea for leesey to be in contact with someone her age.. I know there are different clubs for sports teams etc… There are loads we can do its just adapting and taking extra care!
      Hope leesey is doing well and enjoying schoolXxxx

  8. Nicole Jackson March 8, 2013 at 2:09 am #

    Hello. Just a month ago I was told that I have Stargardt’s and to know was a relief but at the same time it crushed me. I saw a change in my vision around my mid to early 20″s but just thought I needed glasses. I had my eyes tested and was prescribed glasses of which I never filled to wear until 3yrs ago. I remember seeing a TV specail on this when I was a teenager but to be the one facing this is just…….After shedding some tears, I am now ready to learn more and fight. I started by asking about it in a tweet given this link. I know very little of my father’s family history but my mom’s family has dealt with glaucoma and for a while I thought that was my issue. what more can we do?

    • kayleyrose March 26, 2013 at 9:45 am #

      Hey Nicole, hope you are ok :)
      I understand the tears…it can be so frustrating.
      I try to always think of the positives too… And think of the sight I do have and how I can be independent….even though at times trying to do things my own way can take so much longer etc…
      Where are you from?
      Thee advice I was given is to always wear sunglasses, drink lots of water and avoid vitamin a (dairy products)… I can’t really go out without my sunglasses even when it’s a dull day as my eyes really hurt and I do find it embarrassing at time but I just take a deep breathe and kind of think sod it!
      Im 24,,,I don’t really know anyone my own age whose a girl with this condition.. If you want to ring me or anything just let me know… I joined a “macular disease”group which really helped getting things off my chest so if you want a chat don’t hesitate and I’ll send you my numberXx

  9. Rupert September 12, 2013 at 10:52 am #

    Kayley

    My 8 year old daughter Ava has just been diagnosed with Stargartd’s. She had been suffering with vision problems for a few months but the quick onset of the disease has been pretty shocking. Clearly – as everyone above says – it’s a very distressing moment when you find out, but you need to know what you’re dealing with so you can move forward.

    I know my daughter will love your site – she’s a singer, dancer; always drawing something and being artistic. When I show her you’ve been on X-Factor, well that will really inspire her! At the moment she is of course aware she has a problem – as we have made and continue to make trips to see specialists. But I think your site will be a good way to help her see how much she will still achieve if she puts her mind to it.

    I cannot deny that I’m probably finding it tougher to cope with, so it helps enormously to have inspiring people like yourself to show that life can still be led to the full. Not to deny the challenges that will lie ahead, but to know with courage they can at least be put to one side.

    Ava has an older brother and younger sister and of course I am praying they remain unaffected. Time will tell. In the meantime, thanks again for your positivity but also honesty.

    • kayleyrose October 30, 2013 at 12:43 am #

      Hi there!
      Sorry it’s taken so long for me to reply and thanks for your nice words too :)
      I hope your daughters doing ok, it must be hard for a parent to stay so strong for their child when going through such a thing. Sometimes I feel bad when I’m upset talking to my mum as I think I don’t waNt her to feel upset too and worry about me when I’m having a bad day..
      Me and my mum are so close though and probably closer than we would have ever been if this hadn’t of happened.

      I think everyone copes differently.. It’s taken me a very long time to actually realise what is happening for ages I cast it aside and thought “I’ll be ok” etc but I think there does become a time of realisation especially now I’m older.
      When I was first diagnosed I didn’t accept any advice and didn’t listen to much of what was being said as I didn’t believe it was happening to me and thought maybe in a couple of years there would be a cure etc but looking back I wish I had of listened just simple things of feeling like my closet people around me didn’t really understand what I was going through…and I had no one to relate too… No one to compare stories with.. It’s the smallest things really that affect me most like recognising people, reading etc….
      I’ve recently been enquiring about getting into sports teams for visually impared people….
      There are a number of things out there from tennis (with a bell) football etc… Feeling part of something like a group you have common ground in I think is important. There are games for all the family to get involved with too and everyone has to wear black out glasses to make it fair…

      I’ve only literally heard of this yesterday… Maybe this would be a good way of getting the family talking about the condition etc… I know it will take time. Even trying to find another person a similair age as your daughter and meeting up and eventually as your daughter gets older naturally they would probably talk.

      I met a girl recently from my blog who is visually impared and the same age as me and it has been almost a weight lifted, a release that I’m not actually on my own and there are lots of people experiencing similair things.

      Are you based in England?
      There are charities such as action for the blind, RNIB and henshaws…it’s taken me nine years to get intouch this week to see what’s going on and there are a lot… Arts and crafts, relaxation courses…loads of things to meet people in similair situations and to keep in the know with potential treatment etc.

      I have a brother too, he is brilliant. He has good eye sight too.

      It is a strange thing this Stargardts.. It is probably in some ways harder to deal with as a lot of the time people don’t know you have a disability and getting the balance right of independence and receiving help can be difficult.
      Positivity, love and a good set of ears go a long way from family and friends.
      I’m still learning about the condition myself but if you ever want to chat just write away!Xx

  10. Erick October 1, 2013 at 6:12 am #

    You are incredible your story brought a tear to my eye. My name is Erick I am 22 years old and I have had Stargardts disease since I was 11. My two older sisters have the same disease and just like you we have maintained a positive outlook on lifeand never slow down Thank you so much for Sharing your story you are an amazing person and you have a beautiful soul godbless:)

  11. Rosalie Irwin December 10, 2013 at 10:07 am #

    Dear All
    My son is 23 and he has been diagnosed with Stargardts. We feel we have been gutted and in NZ where we live it is hard to find people to talk to. We haven’t been to the Foundation for the Blind but i guess this is where we will turn to. It has been great to see the comments and we hope and pray that the research will find a cure for this disease. Love to you all. From Ian and Rosalie Irwin email. rosalie@hotmail .com.nz

  12. Myra January 23, 2014 at 2:18 pm #

    Thank you for sharing this uplifting story. I have had stargardt’s for some years but only stopped driving 5 years ago. I can relate so well to your story even though I still have some sight in my left eye. To me the challenging part now is explaining to others why I appear to be normal sighted but can’t drive or recognize faces. I feel the concern in my family’s responses to my contast questions, “what am I looking at?” “Who am I talking to?” To others facing this I would ditto your encouraging statement,”whatever you want to do , do it ” …you may simply have to be more creative at ‘how’ you do it! Thanks again!

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