4+ ears with CSR

[flintshire]

Hi everyone, I've been reading with avid interest all of the above posts. When I was initially diagnosed with CSR I was told 'not to worry' you can't lose your eyesight....and to eliminate any stress from life. ( ho hum)

I am female 53, not A type personality, not on steroids and have the average amount of life stress.

Trying not to worry about the decline of my eyesight is nigh on impossible. Bilaterally affected, centrally in one and peripheral in the other.

Does anyone else check their vision immediately on waking in the hope an overnight miracle has occurred? I feel the world is dimming its light on me, and have forgotten how 20/20 vision was

I'm an artist and it gives me the utmost pleasure in putting my feelings and thoughts into form. I really don't know how to face life without being able to continue to do this.

I'd heartily welcome any clinical trial.

If here are medical professionals out there, and have clinical data on any new trials completed, or looking to embark on a new trial. Please contact me!

Desperation now.

Thank you.

[fed12]

I am so sorry, Flintshire. I have read recently about someone with AMD who was a very worried artist, but she found she could carry on. It was in a newsletter from the Macular Society: Helpline 0300 3030 111, (macularsociety.org). Do contact them; they also have details of all clinical trials.

All the best.

[flintshire in reply to fed12]

Thank you!! I shall be doped dialling the number first thing tomorrow.

[Rosalyn-helpline Partner]

Dear flintshire,

We have a free research database which you could join:

macularsociety.org/database

This is the link to the UK Clinical trials Gateway, in case you also wished to consult this independently:

ukctg.nihr.ac.uk/trials

Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. We need the individual’s verbal consent in order to be able to refer them. It takes a counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each:

macularsociety.org/sites/de...

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

I hope that this addresses your query.

Please do not hesitate to contact us if we can be of any further help.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[flintshire in reply to Rosalyn-helpline]

Thank you for taking your time and effort to reply. I really appreciate it.

Four years down the line I've given up the hope of spontaneous remission, and am now trying to research how treatmentay have progressed or not....

I'll certainly use the links provided.

Thank you again.

[Jogie]

Hi Flintshire,

Your post resonates with me. I have bilateral CSR and have had it for over four years now. I can no longer drive at night and am starting to notice an impact on my day-to-day activities. I have had no treatment offered and I feel that I am just being left to 'cope'.

Checking my vision is the first thing I do every morning and every day the grey areas get a little larger.

I can't really offer any advice and I don't know anything about clinical trials, but I can understand what you're going through.

Best wishes, and good luck

Jo