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Living with Sticklers by Sherie

My name is Sherie.  I’m 28 and have 2 children aged one and six. I was diagnosed with Sticklers when I was 3, both of my parents do not have Sticklers but me and my younger brother both have the condition. Growing up with Stickers was hard for me. When I was six I lost the vision in my left eye due to pressure building up after an operation to fix my detached retina. So far I have had six detachments in both eyes, and all before the age of ten, I am very short sighted -18 and during my school years I had one to one support which I absolutely hated especially in secondary school. I found it hard to fit in as I always had to sit at the front to see the white board and I had a support teacher with me in every class. I couldn’t do PE and I was not allowed to participate in contact sports. I have always tried to hide the fact that I’m partially sighted and even today very few people know that I am partially sighted.  I think I’m very good at hiding it. Obviously family and a few very close friends are aware but I don’t want many people to know. These days it is becoming harder and harder to hide.  My vision seems to be getting worse especially at night and I have problems with contrast. I have got a small cataract that I’ve had for about ten years but it is slowly getting worse. That’s what Mr Snead thinks could be affecting my vision more at night, as I literally cannot see a thing at night. This is of course a challenge with two young children. I still try and do everything that all my friends are doing but it is becoming harder.

Both my pregnancies were excellent and I didn’t suffer with many joint pains or have any problems in labour thankfully. Both my children do have the condition but thankfully they are only short sighted. I live only 5mins from the school so I don’t have far to walk which is a massive advantage. My knees are getting worse as I am getting older and I currently live in a second floor flat which is becoming a challenge with the stairs. Carrying my baby up and down the stairs is hard work. so I am looking to move soon hopefully. I just don’t want to move too far as I am so close to the school.

This weekend I had a disaster while out with friends that don’t know I’m short sighted. We went to a few bars and my first challenge was walking in high shoes ( lol) but I managed that without tripping or falling over. We went to another town which I don’t know and this was a scary, although as I like going places I know as I know the layout where the stairs are and the toilets, so I can avoid places where I can’t see. But going to a new town I was completely in the dark literally! ( lol) The first bar we went to was OK, all flat level and no stairs apart from two to get into the bar and it was well lit which was great for me. Then we moved onto the second bar and this was an absolute nightmare. As I was waiting in the queue someone accidently knocked my contact lens out 🙁 lucky I had a spare in my bag which is rubbish, but at least I can see a million times better then without it. Friends couldn’t understand why I didn’t just put the new lens in when we got in the club instead of in the queue.  They were embarrassed, I was mortified. We then got into the club and had to walk down two flights of stairs.  These were well lit so it wasn’t too bad. But once inside the club there was a random step in the middle of the room, no hand rail and not lit at all.  I tripped up it but managed to catch myself luckily. But then throughout the night this step became a challenge as I had to go up and down it, every time I wanted to get to the bar or the toilet. After that night out, my confidence has been affected and I think. In future, I will stick to dinner dates or local pubs that I know well.

After loosing my contact lense I’m now stuck with my spare lense which is rubbish I’m really struggling to see. Hope my new contact lense comes soon as this week will be a challenge with this rubbish lense i refuse to wear my glasses in public as there horrific. We are off to butlins for the weekend as well and im stuck with this rubbish lense.

2 thoughts on “Living with Sticklers by Sherie

  1. You poor thing! I know the feeling! I’m 38 and I have sticklers much like yours. Your story sounds like my life. Embrace it dear laugh about your mishaps (mis steps) in this case. Tell them you have trouble cause if they are your real friends they’ll help ya!!! Give me a email or look me up on facebook I could give you some advice

  2. Hello, my name is Ann and I have sticklers as well. I also am blind in my left eye and have poor vision in the right one so I have to wear lenses. I just wanted to thank you for writing about your experience as it helps me with understanding Sticklers syndrome. Good luck to you!

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