Hi I’m Dale, I have Down syndrome, I’m autistic, I can be extremely challenging because the world doesn’t suit me very well… and I have KC. I will be 40 this year. My abilities are at about a two-year level. I love planes trains rugby and You’ve Been Framed.
When I was 5 my birth Mum had the folds by my eyes resected as she didn’t want me to look Downs. What hospital would do that? Later I was adopted into my always and forever family.
When I was 8 I had a squint corrected and instead of the promised left eye and despite a big marker pen arrow on my face, the guy did both eyes “for good measure”. Ruined my good eye. The medical services have always been careless with me! They told Mum to drive me home straight away. I was cold and grey but they said they needed the bed. In the car I stopped breathing I was so congested.
When I was 11 a doctor in Spain thought I had leukemia and offered to open me up to see, he said it didn’t matter if I didn’t survive as I was defective anyway….we came home fast. I was fine.
When I was 14 I was diagnosed with keratoconus, “severe and progressive.” Gloucester Royal Hospital had no experience and bandaged my hydrops eye which went septic and stinky. Luckily Mum didn’t stick to their advice and we didn’t go back.
She took me to Bristol Eye Hospital for assessment in 2000. We had hope and excitement! The Consultant Ophthalmic Surgeon said, ” Visual Acuity is 6/60 with correction (spectacles). This is probably adequate for his needs. Contact Lens fitting is not a sensible option in someone with an intellectual deficit.”
Adequate !! Er Nope. Luckily Mum likes a challenge. And the word “lenses ” had been mentioned and being told ‘No’, made her cross! Mum found the kc group and via them, the magical Ken Pullum. Ken saw me for hours and hours and prescribed scleral contacts – I have help managing them and have vision as good as anyone since then 🙂 14/20 distance and symbols smaller than 2mm up close.
I was well supervised by Cheltenham General Hospital until staff changes meant they no longer had the expertise. In two weeks, I’m making a return visit to Ken after 25 years. I wonder if Ken will remember us. We remember him; he is my KC superhero.
