Tag Archives: Odette Battarel

Living with Stargardt’s!

Living with Stargardts disease by Odette Battarel

Living with Stargardt’s disease: highlighting rare diseases on 28 February

Original article on londonvision.org

Odette Battarel, Head of London Vision South East, has written a blog to mark this day sharing her own experience of Stargardt’s disease.

Named after Karl Stargardt, a German ophthalmologist who first described the disease in 1909, Stargardt’s disease is an inherited form of juvenile macular degeneration. It causes progressive reduction in the central detailed vision, usually leaving the side vision is relatively unaffected.

Common symptoms of Stargardt disease are grey, black or hazy spots in central vision and an increase in the amount of time eyes take to adjust to changes in light, such as from light to darker environments. People with Stargardt disease may also find that their eyes become more sensitive to bright light particularly, and in later forms of the disease, colour blindness can develop.

Currently there is no effective treatment for Stargardt disease, but there is research ongoing, including investigations around gene therapy and stem cell research. It is hoped that an effective treatment will be developed as a result of this research in the future. While Stargardt disease does cause significant problems with central vision, most people retain most of their peripheral vision and as a result do not lose their sight completely. Making things bigger, using bright lighting or different colours can help people with Stargardt disease make the most of their remaining vision.

“I first came to London in the mid-1980s from France to work as an au pair, which allowed me to spend my evenings taking part in dance classes at the London Contemporary Dance School. However, after a couple of years in the capital, I began to see bright sparkly spots in front of my eyes and strange bright purple flashes. These visual problems eventually got so bad that one day while waiting for the Tube, I realised I could not see the destination of the train on the notice board. After being sent to the eye clinic at St. Thomas’ Hospital I was diagnosed with having Stargardt disease.

Stargardt disease is a bit like Macular Degeneration in that it affects the central vision; it means I can’t recognise people’s faces, or see my own in the mirror, and I need quite large letters to be able to read. I have learnt how to do eccentric viewing, which is turning my eyes sideways to bring my good peripheral vision in the middle; the vision is not as clear or sharp, but it does help. Technology has been really important since my diagnosis. Day to day I use a hand-held magnifier to read, a monocular to read bus numbers, voice over on my mobile phone and SuperNova on my laptop. Assistive technology and other adjustments means that I am still able to work and take part in many activities I enjoyed before my diagnosis – this includes visiting museums and enjoying audio described tours, dancing and oil painting.

Assistive technology has helped me at work and to take part in cultural events but it can’t really help with social situations. Not seeing others is very hard; it means you often fail to greet people you know or hesitate to start conversations with others. Being unable to see facial expressions and body language makes socialising difficult. I still really enjoy dancing and while I can follow my partners it is very hard to see when someone invites you to dance with a small gesture of the hand or a nod of the head. I continuously try to teach people around me to introduce themselves, to let me know who they are and to bring me back to my seat after a dance!

About 10 years ago I discovered Metro Blind Sports and through it was introduced to blind tennis, tandem riding and cross-country skiing. This helped me find a brand new network of friends and I have taken part in many tennis competitions and even did the London Prudential Ride 46!

When I was first diagnosed with Stargardt’s disease I was devastated, and really felt that all my dreams were lost for ever. Due to my diagnosis, I have never driven a car and the last book I read was in 1992. At that point I had no idea what might be possible for me. But thanks to a positive attitude, resilience, technology and the support from friends I am now full of new dreams and feel I can continue to learn, grow, and enjoy life to the full!”

Article by Odette Battarel

 

Try Something New in 2019

Try Something New for 2019 by Odette Battarel

Try something new in 2019

Yesterday I tried archery for the first time ever!.

I play a lot of blind tennis but my new year’s resolution for 2019 is to be brave and try out new things. I looked in Metro blind sport newsletter to see what activities were on offer and spotted archery. I knew a few friends who have been doing it for years and had always been intrigued as to how it works for blind or partially sighted archers.

When I arrived, I was warmly welcomed by Jen and Fred who run the sessions for Metro at the Southfields community school on Sundays. The sports hall was all set up with targets, bows and arrows all ready to shoot.

The Coach was very enthusiastic and very helpful, I started learning where to stand, how to hold the bow and how to load an arrow. I had to feel my way around the bow and the string a few times before mastering the first skills, then the coach guided me to take the right position to pull the string and shoot.

 

 

I was very excited when I heard the noise of the arrow planting itself on the target! This was the very first time I had shot an arrow from a real bow!.

Although I could not see the target it was still very interesting to find out about all the techniques. And then I heard a bang and it was a fellow archer who had just hit bull’s eye and popped a balloon that the coach had pinned to the target! Everyone clapped and we all tried to pop a balloon!

When all the arrows were spent we walked up to the targets to see how well we did and to pick up all the arrows that went astray.

It was strangely calming to stand and think all the instructions, aim and shoot a bit like some kind of meditation. This is a sport, one can do just for fun or it can become really competitive, Fred was telling me how some of the Sunday archers had started with them and then moved on to enter competitions and bring back gold medals for the club.

I would definitely recommend others to try something new and have a go!

by Odette Battarel

Up Coming Archery sessions

Vision Impaired Archery – 14 July

Venue:
Southfields Academy Sports  Hall  -  Aspire@Southfields, 337 Merton Road, SW18 5JU
Time:
12 noon - 2.00 pm
Phone:
07956292046
Date:
14th July 2019
Cost:
£2.50 for Members ** £5 Non - Members
More Info

Vision Impaired Archery – 11 Aug

Venue:
Southfields Academy Sports  Hall  -  Aspire@Southfields, 337 Merton Road, SW18 5JU
Time:
12 noon - 2.00 pm
Phone:
07956292046
Date:
11th August 2019
Cost:
£2.50 for Members ** £5 Non - Members
More Info

Vision Impaired Archery – 8 Sept

Venue:
Southfields Academy Sports  Hall  -  Aspire@Southfields, 337 Merton Road, SW18 5JU
Time:
12 noon - 2.00 pm
Phone:
07956292046
Date:
08th September 2019
Cost:
£2.50 for Members ** £5 Non - Members
More Info

Archery Outdoor Championships

Venue:
Lilleshall National Sports Centre
Time:
TBC - TBC
Phone:
01792 812212
Date:
15th September 2019
Cost:
Call Contact to Confirm
More Info

Vision Impaired Archery – 13 Oct

Venue:
Southfields Academy Sports  Hall  -  Aspire@Southfields, 337 Merton Road, SW18 5JU
Time:
12 noon - 2.00 pm
Phone:
07956292046
Date:
13th October 2019
Cost:
£2.50 for Members ** £5 Non - Members
More Info

 

Tennis AGM & Social 7 March!

Tennis AGM & Social 7 March at the RNIB

Metro Blind Sport will be holding the Tennis AGM on Thursday 7 March at the RNIB on Judd St!

This is for our blind and partially sighted Tennis players to come to give feedback and reflect on the year gone by and to give Ideas and suggestions to further develop sessions and events for the coming years and to hear what is going on the National and international scene.

Venue: RNIB, Room 4, 105 Judd St, London WC1H 9NE

Date: Thursday 7 March 2019  Time:   6.00 pm  to 7.00pm

Social:  After the AGM we will then go to a nearby Pub for food and drink!

Contact:  odette.battarel@londonvision.org

RNIB phone:  0303 123 9999

We look forward to catching up with you all over some food and drink!

Odette Battarel

 

 

Tennis AGM & Social 7 March

Tennis AGM & Social 7 March at the RNIB
Venue:
RNIB, Room 4, 105 Judd St, London WC1H 9NE
Time:
6.00 pm - 7.00 pm
Phone:
Date:
07th March 2019
Cost:
Free, food and drink not included.


Metro Blind Sport will be holding the Tennis AGM on Thursday 7 March at the RNIB on Judd St!

This is for our blind and partially sighted Tennis players to come to give feedback and reflect on the year gone by and to give Ideas and suggestions to further develop sessions and events for the coming years and to hear what is going on the National and international scene.

Venue: RNIB, Room 4, 105 Judd St, London WC1H 9NE

Date: Thursday 7 March 2019  Time:   6.00 pm  to 7.00pm

Social:  After the AGM we will then go to a nearby Pub for food and drink!

Contact:  odette.battarel@londonvision.org

RNIB phone:  0303 123 9999

We Look forward to catching up with you all over some food and drink!

Odette Battarel