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  • Stickler Syndrome UK

    is non profit making organisation that provides information for families, healthcare and medical professionals affected by or caring for people with Stickler Syndrome.
Find out more and keep up to date with Stickler Syndrome UK.

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.

Bayer Ophthalmology Honours for Mr Snead and his Cambridge Team

Stickler Syndrome UK has great pleasure in announcing that at a ceremony held on Thursday 1 December 2016 at the Royal College of Surgeons in London, the Stickler Syndrome Service were commended in the “best team” category. The national Stickler Syndrome Diagnostic Service was a very strong entry with successful patient pathways linked to research and very strong patient support. The judges described the team as ‘very specialist’ and world class.’ It is an excellent example of multi-disciplinary working that can he applied to other areas. They were also the winners in the category of “best MDT team” working in the field of Ophthalmology. The clinic came about as a result of the research and MDT service. In 2011 the Department of Health commissioned the team to provide the now National Stickler Syndrome Diagnostic Service for all patients in England with Stickler syndrome. Health boards access the service via their own commissioning arrangements ensuring that all UK NHS patients have free access to a true MDT service unparalleled anywhere else in the world. This is a great achievement both for Addenbrooke’s and for the Stickler service and I am sure all our members will join me in congratulating the team who work tirelessly on our behalf to improve the time of diagnosis, identify and improve methods of dealing with repeated retinal detachments and continue to research all aspects of this grossly under-diagnosed progressive condition, so that those affected can understand the problems associated with this multi symptom condition and learn to live within its restrictive confines.

Conference Photo’s!

What a great few days with our Stickler family the conference was. Really positive feedback as been flooding in and hopefully another one will be in the not too distant future! Here is a few photo’s from the weekend.

Help Wanted!

We would like to introduce a guest blog section on the website. These blog posts are going to be far from being medical, they are intended to be “By Stickler people for Stickler people”, so if you have anything you would like to write about that you think others with Stickler would be interested in then please get in touch. You don’t have to be a writer, and you don’t have to write pages and pages, ideally a post a week (by a different person each week not the same person!) would be awesome, but even one a month would be great and spread awareness. A sample idea to kick it off would be if any parents out there with teenage Stickler kids would like to write about transition from primary school to secondary school, even better is if they could then convince their child to write a follow up from the childs point of view too! One of the things that came out of the UK conference this weekend I personally noticed was how much everybody was commenting on how much information they got from just speaking with other families. Another series for the blog posts could be “Living with ….” i.e. “Living with limited vision”, “Living with chronic pain”, “Living with hearing loss”. If you know anyone who would be interested please share this post with them. These blog posts will remain on the website and be indexed by Google so will act as a great resource to anyone searching for information on the condition.

Photo’s Please!

Fresh off the back of the UK conference this weekend I would like to ask if any of you who attended would email me ([email protected]) any photo’s you took and don’t mind sharing. I would like to post some pictures of the weekend on the website. If you have any feedback about the conference please email [email protected] we would really like to hear what you thought and any improvements we can make for next time.

Conference Latest

Bookings for the conference is now closed.  We have a very interesting set of speakers and 92 people have booked, so there will be plenty of socialising.  During the next few days  I will be sending out further information about the hotel, conference and directions..  See you on the 21st

Stickler Syndrome UK Conference

All the subsidised places for the Stickler Conference 21-23rd October in Coventry have now been taken, but we do have a few places left at the full price.  If you are interested in attending, please contact Wendy on [email protected] ASAP

Important News About the Conference

The good news is that the highly subsidised places at the conference are going rapidly with application forms and payments arriving by with every delivery.  Don’t lose  out!  Get your application and deposit/payment in ASAP. Once all places are taken we will not be able to accept any more applications.  Remember the letter sent to you states in the last paragraph that applications will be accepted on a strictly first come first serve basis.

The bad news is that because of the response by members we are unable to offer places to non-members.  If you wish to avoid any disappointments in the future please join us by becoming a member.