..pls help info for my brother

[pila123]

Hello, I am writing this email on behalf of my 36 yr old brother who has central serous maculopathy and is quite depressed and scared. We are looking for guidance/understanding on what to do.

He does not fit any of the description for this case (he is young, no steroids, not diabetic, no stress, healthy diet, works out at gym everyday)...so we don't know why this happened.

Two years ago it started on one eye which filled with liquid and had ephitelial detachment. Since then he has had 7 episodes in total and the last episode also affected the other eye. He has no central vision on one eye and no peripheral on the other, he sees therefore distorted images and vision and colors have been affected. I believe after 7 episodes and each worse, it is chronic CSR.

Some questions:

- Is this or will turn to macular degeneration??

- He worked many years at night looking at the computer,,, can this be an important reason??

- As he has wet type, chronic, both eyes now,,,but 36 yrs old so no age-related,,,,, Is there any substantial hope? or will he gradually get worse?

Those are my main questions as I believe there is no treatment but to wait, although waiting just makes it get worse.... he takes supplements, vitamins and works out every day,,, but hopes are getting dimmer by the minute,,,

Please advise on any information/recommendation you can provide,,, but please be realistic and objective, I don't want to get high hopes but rather understand how big this monster of a situation is,

Thank you,

Judy

[tallyho]

Out of interest does he live in the Uk?

[Macular_1]

Hello Judy,

I believe that you have sent an email to the Macular Society Helpline

If you live in the UK, please call the macular Society Helpline on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Central serous retinopathy (CSR) affects the central area of the retina, known as the macula. CSR can cause vision to be blurry and distorted due to fluid collecting underneath your macula. Objects often appear smaller and distorted in the affected eye.

In most people, CSR gets better on its own and doesn’t cause long-term changes to vision. In some people it may re-occur. The more times someone has CSR, the higher the chance of having some permanent changes in your vision.

From what you say, your brother has developed a ‘wet type’ of the condition. Has he been given any treatment? He may also have a ‘Juvenile Dystrophy’?

I am afraid he would need to be seen by an eye care professional to establish if any treatment is appropriate.

I should mention however that it is highly unlikely that using a computer at work, even at night, would be a contributory cause.

Please see the following links to our booklet about treatments for macular conditions and Juvenile Dystrophies;

macularsociety.org/sites/de...

macularsociety.org/sites/de...

Best wishes

Macular Society

[pila123 in reply to Macular_1]

Hello, thank you for answering, my brother has wet type cronic CSR,,, however, we haven't been able to hear about someone getting better or having no more recurrences after a number of episodes,,, does this go on for life? if so, does it then always progress to AMD? when can it be said it is officially AMD? He seems to get worse with every episode, now both eyes affected, we are all very nervous he will not get better but just worse for life,,, is there any further information on what to expect? No doctors here have a clue, seems they are all taking guesses, we don't know what to do, but seems we have to do something or it can get worse, may PDT??

[Macular_1 in reply to pila123]

Hello again Judy,

I am afraid that we cannot speculate on the future.

Sadly it is up to the medical people to advise and treat your brother.

I am afraid that at the Macular Society, we can only comment on treatment in the UK.

Best wishes

Macular Society

[rosyG]

Hi Judy,

Have a look at Medscape online- this suggests only 5-10 per cent have long term problems and it seems normal to have repeat episodes and for both eyes to be affected.Also says resolves spontaneously. I would read up on this and then your brother can ask his doctors how his experience fits into these facts. Seems age starts at 20 and doesn't seem to mention AMD

[pila123 in reply to rosyG]

thank you Rosy, did find info on Medscape, unfortunately we don't know if this is a progressive disease for life, very scary

[Ayayay80]

Hello Judy

Sometimes blisters can appear on the retinal pigment epithelium, the sort of blisters you may get on the skin due to an allergy. It is as yet unknown what causes it. A small tear would allow the fluid to seep onto the retina and the macula. Has a tear been mentioned to your brother? Repair of the retina and laser treatment has been suggested to dry up the blisters. I don't know if his condition would lead to AMD, but whatever name they want to put to it, it clearly affects his maculas and he is at risk of permanent damage. However, stress is suggested as a major culprit and is to be avoided at all cost, so they say. Not an easy task under the circumstances. He needs to have a long talk with a consultant who will listen and explain. And that is not easy to find either, but he should insist after so many episodes. Some eye clinics have PALS who have gone through the same thing and know what it is all about and can give moral support.

Hope this helps a little.

[pila123 in reply to Ayayay80]

thank you, we are trying to locate PALS around here, need to find people with similar situations, how unfortunate this so rare disease exists, seems so unfair

[180164]

Hi there i also have chronic CSR plus wet macular which started in 2008. I am now registered partially sighted and can no longer drive. It is a rare condition I have have pdt treatment when needed. I try to explain to people when I see it's like looking through a must or a bubble. I too didn't fit the criteria for the condition. Tell your brother not too give up and stay strong. Do you live in the UK and has he had any treatment I'm 53 now. Regards Mandy

[pila123 in reply to 180164]

Hi Mandy, we live in Monterrey, Mexico so you can imagine much less information available, we don't even know anyone who has this..in your case, did it progressed for worse? it never got better? its even scary to think he might not work later on as there is not even government support here for disabilities or very very little,,, he is so young, there has to be a way to make this better,,,,sorry for some many questions but did you have many episodes or does it stop at some point? I've heard someone had over 20 but his sight is not that bad, he can still do everything but we don't know why some are ok and others aren't even after many episodes..

[Hidden]

Google Doctor Kondrot or better sill phone him?

[BasiRose]

I agree with Pauline. Look up Dr Kondrot on Youtube. You may find something helpful there. I am so sorry that your brother is going thru this! Prayers for answers, healing and hope for his future!