Pdt

[180164]

Hi all. I've asked this question before I've got wet amd plus chronic CSR. I'm 53 now it all started 8 years ago. I've never had injections and told I never will I've been having Visuldyne PDT treatment last treatment last year. I can no longer work or drive is there anyone out there similar to me. Thanks in advance : )

[rosyG]

I don't know enough to answer but wanted to say I'm sorry to hear this has affected you so much.

Take care

[180164 in reply to rosyG]

That's really kind thank you. I forgot to mention that I'm registered partially sighted now too.

[Ayayay80]

So sorry to hear of your problem. That is so sad when you are still so young for that sort of thing. Is the eye clinic planning more PDT for you? In any event, keep your chin up and make the most of your remaining vision. I know, words are easy; keeping the spirits up is not always quite so straightforward. Perhaps you could phone the macular society for advice and counselling. It may help. Sending you my best wishes.

[180164]

If I have more deterioration on my next appointment I will have another treatment. I try to stay positive my outlook is there is someone always worse off than yourself. : )

[Rosalyn-helpline Partner]

Dear 180164,

We do have a number of working age and macular groups around the country (W@M) groups. These are useful sources of information and support. Please contact us with your location if you would be interested in knowing details of the nearest one to you.

In addition, we do have a free befriending service on the phone which can be a useful way of linking up with someone with the same or similar condition. Again please contact us if this may be of interest.

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.

Kind regards,

[orangesky in reply to Rosalyn-helpline]

I’m in Canada is there a place here for me to call

Ty

[Rosalyn-helpline Partner in reply to orangesky]

Dear orangesky,

Since my post 3 years ago we have launched a new Working Age and Young People's Service:

macularsociety.org/news/new...

if you would like Colin's contact details, please email us at:

[e-mail]

There is a new Facebook page linked to the Working Age and Young People's Service.

Please access this via the following link:

facebook.com/macularsociety...

Kind regards,

Macular Society Advice and Information Service

[180164]

Thank you for the reply. I did join a group at my local rnib centre however everyone was so much older than me so it wasn't really me.

[Ceri2]

The w @ m groups, mentioned above, are well worth attending if there is one in your part of the country. Ours has members aged 20's - 60's. All with different types of macular/ inherited retinal conditions and different levels of vision. The thing that we all have in common is that everyone supports everyone else. Worth giving a go if you can find one near you. The helpline have the details. Good luck.