MACULAR DEGENERATION...need info...

Flatbush · ‎07-18-2015

Has any one here been diagnosed with it?

It is chronic and I have recently been diagnosed with it.

Can anyone rec. a forum or a place where I can find info from those who are experiencing it ?

I have researched it, and there are very few books (which I have already read ) and medical sites, but I cannot find info from those who have been diagnosed.

Thanks,.....it is a bit scary, so need info.

SarahW · ‎03-09-2010

Sorry to hear of your diagnosis. Check out Reddit and search for macular degeneration. Good luck.

Wsmom · ‎03-09-2010

I'm so sorry you're dealing with this, @Flatbush . I am sure Facebook has groups for it. I belong to a few groups for various issues either I or loved ones have, illnesses, etc., and they have been wonderful. If you are not already on FB you don't have to put personal info on there, pictures or anything else. You can go lurk and just read what people have to say or ask questions. There may be groups for types of medication people take.

I have found the info I have gotten on FB to be excellent. Always take everything with a grain of salt and remember everybody's experiences are different but I have found great foundation info. Even "meeting" people going through what I am going through.

I am still oxox · ‎03-09-2010

There are treatments for it did you see a retina specialist?

Stop being afraid of what could go wrong and start being positive what could go right.

DrakesMomma · ‎06-02-2010

I was diagnosed with early on-set of age related macular degeneration at 38. When the eye doc saw progression at 39 I had genetic testing done. I have more bad genes for MD than the lab has seen in one person.

I don't know if any of the things I have done/are doing has made a difference. I eat more fruits and vegetables than before the genetic testing. I take vitamins. I currently take two different from Andrew Lessman. I go to the eye doc four times a year.

The only thing I've done on line is keep up on real research.

FLtricia · ‎02-18-2012

I have intermediate macular degeneration. They can tell that I have it, but it has not progressed. There are two types of progression, wet or dry. If wet, they can give you injections to stop the progression and vision loss. Unfortunately the dry has no treatment to stop it.

I have had this for many years, and my specialist recommends Preservision Areds-2 supplements. It has been proven to help prevent progression.

My mother also had macular, and progressed, one eye dry, and one eye wet. She had great vision loss, but went to a low vision center and was able to remain alone in her home and function.

My hope is that I may not ever have progression. My retina specialist mentioned that at one visit, and I hope he is correct.

I am sorry for your diagnosis. For a long time i felt that I was waiting day by day for "the bomb" to go off. I have decided to live my best life and deal with this day by day. I am thankful for every good vision day that I receive.

Carmie · ‎10-25-2010

My friend I take care of has it. I take her every couple of months to get an injection in her eye. She says the injection doesn't hurt. She has been getting the injection for about 7 years now and will for the rest of her life.

She used to have to go more often, but the progression has slowed down so the injections are more spaced apart. She also takes PreserVision.

I know it is a genetic condition. The doctor said for most people it does not cause total blindness, but it can distort vision.

It is best treated by a Retina Specialist.

PINKdogWOOD · ‎05-13-2010

A couple of years ago I was sent to The Retina Center here in town to further do testing on what's going on in my right eye. For 40 years or so my Opth Drs have taken tons of photos of my right eye all through the years of exams. They thought I had MD but the Dr at the Retina Center more thinks or diagnosed it at what's known as Best Disease. This is what they call a juvenile MD and it's genetic.

Well doesn't this make me go, okay mom and dad, who had it, where did this come from? It would be nice to talk this up with my parents but neither are around anymore. My Dr really dug deep into my problem by sending me to this center for a better and more accurate diagnosis but this happened years after my parents died

This looks like a patch of scar tissue right in the middle of my sight line right eye. Of course I wear glasses to aid my eye sight but I'm also developing cataracts which also need to be dealt with. I see my Opth on my birthday no less in April, cannot wait to see him so I can get cataract surgery done in both eyes to hopefully help myself out. I'l actually very excited to get this done.

I will say it's really depressing to know my eye sight is failing me. It's affecting my driving in that I'm permitted driving only in daylight. While I know the Best will not go away, will not get better but I do hope and am counting on at the least cataract surgery to help me out a lot or much better than now.