Wednesday, May 23, 2007

Living with High Myopia and Myopic Degeneration

I can’t find anyone out there who seems to be experiencing the same vision problems that I’m going through. I have high myopia which had lead to Macular Degeneration and I’m 23 years old.

All the support groups out there are designed for older people who suffer from the more common, age-related kind. In all my years of searching for others like myself to talk to, I have never found anyone.

For me, being shortsighted was annoying because I always had to get up close to read things. Macular Degeneration is just plain horrible because you can’t read things full stop.

I hate not knowing what’s going to happen next, I hate waking up every morning to check and see if I’ve lost anymore vision and I hate that sick feeling I experience when I realise I’ve lost more vision yet again.

All my friends have perfect vision, I’ve always gone through the mainstream schooling system and been brought up like any other child and I’m thankful for that. Out of all my friends and family there is hardly anyone that fully understands what I have to go through. The thing about extreme shortsightedness and macular degeneration is that people can’t tell you have a problem just by looking at you; it’s up to you to tell them.

In most cases I don’t tell the people that I have vision problems. I’m embarrassed of my problem, I don’t like to call it a disability, I don’t like to be treated any different and I don’t want people being nice, polite or especially kind to me because of my problem. I just like to be treated normal like anyone else; this is why I tend to not let people know. The downside to this is that obviously sometimes I’ll make myself look stupid because I wont be able to read that small print or I might completely ignore someone that waves to me across the room, however even if I did tell people, they may not care or chances are, they wouldn’t understand.

David from my MD emailing support group wrote the following in an email to everyone, it illustrates my points perfectly and is so true.

“It takes a person with plenty of wisdom, and understanding, who does not have vision loss, to fully empathize with someone who does have significant vision loss. It is "an invisible disease" - as others have said. When we see Michael J. Fox on TV, doing a spot to support research for Parkinsons Disease, his condition is very obvious and dramatic to behold. His affliction causes very easy-to-see abnormal motions, so it's very easy (and rightly so) to sympathize with him. Christopher Reeves, in a wheelchair, similiar
idea.”


Not being able to drive a car does suck, but to be honest, not driving a car is the very least of my worries, I just want to be able to maintain a stable amount of vision to go through life.

I hate not knowing what’s next! I know it could be worse, I know I should be thankful I don’t have a terminal illness and I am, but my vision is so important to me and it’s just so scary.

I wish we had a cure or at least confirmation that there will be a cure in ten years, that would make my life so much easier to deal with if I knew there would be a cure in 10 years, but that fact is, I don’t and no one does.

I will never admit defeat to my vision and maybe that’s a bad thing, but for me, there isn’t any other way.

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87 Comments:

At 7:03 PM , Anonymous Anonymous said...

Hey ,u’ve got company!!.I too suffer from very high myopia and macular degeneration.I have some symptoms of retinal tears . Mine’s a case of genetic inheritance (manufacturing defect if i may put it that way).I am in my early twenties.Totally dependant on these thick eyeglasses.My vision is really very poor.On the eyechart i'm hardly able to read 2 lines inspite of wearing high power glasses!!).Its always been that way for all these years.

Got my first pair of glasses at a very tender age.As a kid i never
realized that i had poor eyesight.Just was under the impression that i had to wear glasses to see normally.Going out would attract lot of curious stares from onlookers and passerbys (its like for the first time ppl are seeing a toddler wear thick glasses!!).Also an occassional advice from some senior citizens or other mothers (same old stuff like eat carrots and green leafy veggies,some eye
Exercises etc) out of sheer concern.

Schooling was not tough but also not so enjoyable.Always had to occupy the front bench much to the chagrin of my backbench classmates (they used to have issues regarding my tall stature ).
I never was able to see the board clearly even from the first bench unless ofcourse it was just about a feet from the board which in most cases it wasn't.i would really feel guilty of always occupying the front row.Sometimes
even teachers get a bit usympathetic and ask u to change
benches or go back when other students complain (i still
cant figure out what's so special sitting in the front
bench that makes all kids fight for it!!).Friends were
helpful but also cruel at times.They couldnt get enough of
my face without glasses (yeah ,i'm quite cockeyed
too!!!!) or askin me to count their fingers.I had to read all books really very closely which would look abnormal.Teachers would always comment on this and
tell me to read from the normal distance saying that my
eyes would get spoilt(common how much more spoilt can they
get than this!!!).As i grew up i used to feel very ashamed when i
used to see some old person read that way.It looks awfully funny.As i grew i decided not to read like that anymore in public and thus started to read with glasses.Its strainin but it saves u from a lot of those awkward moments.Once i even requested my teacher not to ask me to read in front of the entire class.By god's grace i managed to do quite well in studies but was a complete zero in sports and other extra curriculars.

I chose the field of computers for college as i knew other professional fields would
demand a reasonable amount of good vision.

College life is really dull and boring for me.i always hide
my problem.Its sometimes better to keep mum and suffer than to always tell others your problem that seems so sympathetically peculiar to them or its quite irksome to tell the same thing repeatedly.I have now stopped requesting for special help and try to improvise my own way of managing things.I no longer sit in the first bench and deliberately move to the back benches.sitting in the first bench now doesn't help now as my vision is getting a bit worse. Even if I
cannot understand a word of what is being taught i just
keep quiet and read the stuff from books back home.I hate
to admit the fact that i cannot see anything even from the
front rows.Its very embarassing.

My constant fear is that as i grow older my sight shouldn't also slowly worsen especially when my studies are still in progress.I
am even unable to read whats on the computer screen unless i
go awfully near or i make the fonts terribly large.

Got a couple of more years before i finish my education. Now
a days i dont feel like studyin.i just want to discontinue
my studies.hate going to college.

My predicament is not this bad eyesight but the fact that
I'm living in a twilight zone.I neither have considerable
vision loss to qualify as legally blind nor do i have
normal eyesight.Its like being trapped in a quicksand
(neither water nor land).

On my last visit to the eye doctor he said my retina degeneration was progressing and has prescribed some really expensive medicines.

Most of my family members have some health problem or other.This really irks me to depression.

Reading your blog gave me a sigh of relief as now i know that there are others like me out there and that my fears are all legitimate and i'm not creating much ado about nothing.

 
At 6:08 AM , Blogger Jena said...

Hi, I wanted to tell you that you aren't alone. I, too, suffer from myopic degeneration and just had my first CNV and Avastin injection on Monday. I've been looking online for support, but all I can find is AMD sites. If you come across a group you find helpful, please post!

 
At 6:05 AM , Anonymous Rachael Nex said...

Hi,
More company here. I have pathological myopia and lost all but the very lefthand bottom peripheral of my vision in my left eye overnight when I was 21 due to myopic md. Three years later I had a sudden loss of central vision in my right eye whilst drying my hair. That was in 1996 when any of the drugs that are around today were mere pipe dreams.
Over the years (I am now 35) I have become legally blind as it has progressed to a stage where I cannot read even the top line of the eye chart with contacts. With my left eye it's a case of "Chart ? What chart ? Who are you again ?" and in the right I can just about tell the chart is there but nowt else. After many years of being a white stick user, I've just applied for a guide dog.

I understand how it is not to want to admit to yourself or anyone else that you have a "disability". Afterall, this is just a label - it's how you feel about yourself that counts.
I've had twelve years or so to get used to being severely visually impaired. I still feel like crap about it but I've just learned to get on with it. If people want to help me across the street I let them - if they are patronising I just take their help, which benefits me, and ignore their attitude, which means it affects no one but them. But it is hard to do that day after day. My fiance is also visually impaired - he lost an eye aged seven and then lost all the sight in his other eye at 16 due to glaucoma, so he has no sight at all. We help each other, and with my even very limited residual vision, I can feel useful to him as he has none at all.
I hope your treatments help with your visual issues - I very much wish the drugs had been around when I needed them, but sadly now the damage is done for me. But I see it this way - it could be an awful lot worse. All the best to you and remember - you're not alone !

 
At 1:33 AM , Anonymous Anonymous said...

I am so thankful that I pulled up this website and read your comments this Sunday morning. My fiance has been diagnosed with Myopia as a child and was informed that his condition would worsen with age. Of course, he thought that the word "age" meant 50 and older. He is now 33 and has lost complete vision in his right eye and the left is diminshing quickly. The one thing I want to say about him is that he has lived many years feeling sorry for himself because of his eyes. To this day, he smokes weed and although I don't, I would ask him "How do you know that smoking weed doesn't make your eyes worse?" At this point, he is seeking the help that he's neglected to use for so many years. Never feel like you can't make a difference or be a blessing to someone else. You have all been a blessing to me today because although I have perfect eyesight, you provided an understanding of what he's going through that he had a hard time communicating to me for the last 18 years. I thank you so much and as I head to church with our 11 year old, I will pray for all of you. God Bless!

 
At 12:20 PM , Blogger Ed said...

I have Degenerative Myopia as well. I had bleeding in my left good eye and treated with Avastin injection, after the injection that healed the bleeding, a tear follows, which was treated with laser. My right eye can only see glimpse of things or silhouette of things and very blurred. I would undergo cataract surgery on my right eye on Aug 4, 2008.
I heard that Schelera buckling which ties the eyeball from further elongating and thus prevent retinal detachment. Please excuse the spelling of schelera, not sure. Here's a link to an article - http://www.mdsupport.org/library/degenmyopia.html
I hope this help. Also, practise to close both eyes and cover with both palms at least 15 minutes in the morning and afternoon. This is not sleeping, otherwise we'll all wake up with good sight. This gives a relaxing effect to the eye ball and retina as well. And don't forget to pray to Jesus, He heals the blind. Have faith my friend.
Ed

 
At 11:03 AM , Anonymous Anonymous said...

Hi Anonymous, I'm 31 and I've suffered from degenerative myopia my entire life as well. I was officially diagnosed with it about 10 years ago and my vision has now progressed to a -21.5 D. I know the feeling of sitting in a room with people old enough to be your grandparents. Hang in there, make the best decisions for yourself and your future, just don't give up. I'm currently pursuing my master's in Education. I figured I can do that regardless of how much vision loss I end up with. I wish you the best, and just want to let you know that you're not alone.

 
At 4:42 PM , Blogger CS said...

I am 44, and had a macular retinal tear on the right eye exactly 20 years ago. Everything went on fine (except for lots of floaters) until about few months ago when it deteriorated significantly. Doc said I have the "dry" type of myopic retinal degeneration. Over the last few weeks, it has progressed so quickly that my vision dropped from 6/6 to 6/9, and I think it would be about 6/12 now, in about 1 month. There are no tears, just the retina acting up. Feel sad and scared, but unsure what can, if anything be done about this. Left eyes still plodding along, with moderate myopia, but scan shows retinal cells are dying there too. Anyone has any suggestion how to prepare for blindness? By the way, I am a doctor, but may have to stop working before too long.

 
At 9:23 PM , Anonymous Anonymous said...

Hi, I am 27 and I discovered to have myopic degeneration last week. I am not sure if you read your blog still. I will love to talk with somebody that is going through the same pain.
Lisa.

 
At 11:53 PM , Blogger Simon said...

Hi Lisa, if you or anyone else ever wants to talk, please feel free to email me on simon14@gmail.com . :)

 
At 12:13 PM , Anonymous Anonymous said...

Hi,
I sent you an email about a month ago. Not sure if you read it.

Luisa.

 
At 3:02 AM , Anonymous Pinkjeane said...

Hi: My name is Jeane. I am 63 yrs. old and have been legally blind for almost 10 yrs. now. I always had bad vision (myopis). I started wearing glasses at the age of 1 Yr. I attended school for the blind for a while. Gradully my vision kept getting worse until I started to bleed in both eyes. They first diagnosed me with macular degeneration but along the way it changed to myopic degeneration. Looking for someone close to my age with similar condition to chat with. I can be contacted at Pinkjeane@aol.com.

 
At 11:02 PM , Anonymous SynchPedro86 said...

I have myopia as well. Minus 4 may seem mild to most eye specialists, but if that's meant to make me feel better, it ain't gonna work, guys.

It is incredibly annoying to not be able to see without visual aids. When I remove my glasses, or if I am not looking through the lenses properly, I can only see a blur. That's it. My world is just a smoke screen.

At night, when I am coming down my street, without glasses everything is a total blur again, only worse. All I could see the other night there was a huge beam of light at the other end, which is supposed to just be a lamp light. It's really crap having myopia.

I did ask about laser surgery, but I was told it would cost three thousand pounds. I got a phone call about it again, and the lady said I could get a cheaper operation for around 1400 big ones.

Don't do it. You'll probably go blind. All they want is your hard earned money and the worse the operation, the worse your sight will become. And it seems you're being forced to pay to save your sight.

It's not right at all.

 
At 11:44 AM , Anonymous Anonymous said...

Hello! I am a 3rd grade teacher and have a student with myopic degeneration. Please help me help her! She is in special education, and is a sweet little girl. Right now, she gets VERY close to the computer, and holds her books closely. She says that it helps to put a red overhead sheet over the text in the book. Please help give me ideas that would make school more fun and more easy to her. THANK you and BLESS YOU!

 
At 6:52 PM , Anonymous Anonymous said...

This is such a neglected area of eyecare.

Most often genetic, Degenerative Myopia is usually due to myopia over -6 Diopters. In its most serious form it is due to progressive axial myopia.

It is a significant cause of vision disability and blindness, world-wide.

The most common complication is myopic macular degeneration. The eye grows too long in childhood and adolescence, but continues to stretch longer in adulthood. Stretching of the macula causes degeneration of this area of fine vision. This may involve bleeding and in such cases Avastin/Lucentis may help to slow vision loss. However, the process is ongoing. It is impossible to predict the severity or the timing of vision loss in such cases.

Keeping the eye's pressure from being over 16 mm Hg may help. However, as tissue stretching is the cause of the problem, surgical buckling has been shown to control ocular axial enlargement and may be of help in limiting future vision loss. Eyes at risk for myopic macular degeneration have axial lengths over 26 mm.

The clinic website retinaldiagnostic.com has information that may be of interest to readers.

 
At 3:10 PM , Anonymous Dr. Wallace said...

Have you found any developments with the new treatments for macular degeneration?

 
At 11:58 AM , Anonymous Anonymous said...

Hi, I too have Myopic degeneration and Macular degeneration. I am glad to have found a site where there are others who are having the same problems. Unfortunately, family and friends and even drs do not understand what it is like. Had laser treatment for bleeding in both eyes, also eye injections. Lost central vision in left eye now have lost more vision in my right eye ("good eye") from this condition and recently from retina detachment which also affected the macula. I hope that one day there will be more resources to help people like us.

 
At 10:01 AM , Anonymous Anonymous said...

Hello. Im a 28 year old, Engineering student. I had my first (noticable) macula hemmorage about 4 weeks ago. At that time I recieved my first Avastin injection. So scary!! My eye specialist that I have been seeing (haha) for 26 years never noticed that I had tears in my retina. When I was referred to the Retinal specialist after my hemmorage he found plenty of scarring that was in the retina where it had cracked before. This is mind boggling. This has certainly thrown me for a curve. anyone want to talk to me can email at heartmd@auburn.edu

 
At 3:11 AM , Anonymous Anonymous said...

Praise God, I am so grateful that the Holy Spirit led me to this blog. I know that God will continue to keep me and give me strength to go through this season in my life. Although I am not as young as some of you, I am 47 years old. I have had eye problems since birth and experienced the "thick glasses" all through school. I had a detached retina in my left eye and partial detachment in the right eye when I was a freshman in college. I had surgery that resulted in significant vision loss in the right eye. I wear contacts. I have to enlarge the font on my computer screen to extra large and use a magnifying page when I read. I am currently looking for some organization that will assist me in getting other aids that will make my life easier. Although my eye doctor has told me that my vision is stable, I am noticing that I cannot see as well as I did months ago. I cannot see faces of people that are standing 10 feet in me. I have difficulty in seeing faces of people when there is light behind them. I pray daily and I know that God will provide a way for me to see what I need to see. I too am very private about my sight because I am vulnerable to others knowing about my "disability". I do not even tell my husband when I am having a "bad eye day" because I do not want him to worry. I do not want people to feel sorry for me. Thank you again for sharing your story and hopefully we can be an encouragement to one another.

 
At 12:21 AM , Blogger Pankaj Arora said...

well, another company for you here
I am pankaj from bangalore,India..
i fell in a pit in my childhood when i was four and one stone entered my right eye ...i was full of blood and then 6 stiches were required to fix it..
At that time, the doctors told that somehow my eye is saved and i can live a normal life...
After a few months, my dad discovered that m not able to see a thing kept very near to me...till then...the blurred world was actually the real world for me as i was a child...
When i went to the doc....they found -8 no. in my right eye...
My father found a famous doctor in Indore....Dr. Hardia...we later found how corrupt was he for money...
In 1994 when i was 8...my father opted for a surgery that too RADIAL KERATATOMY (RK)for my right eye...since dr. hardia was doing it to children as well for money though it was later found out that it should not be done on people less than 18 years old...
i underwent that and since then the vision in my right eye is 6/12 even with the glasses...
the whole strain fell on the left eye and it also came in the grasp of myopia...
now m almost 25, with -15 in left eye and -9 in my right eye and still, the whole burden is taken by left eye since right's vision is less even with the glasses...
I am an engineer, a masters in electronic controls...working in an industry (GM)and have to work a lot sitting in front of the computer and in electronic labs and all...

The problem is doctors are saying that they can't do LASIk on my right eye as RK is already done and doing laser for the left eye only poses the risk since that is only the functional one...

I am posting here as there are so many people suffering from diffrent kind of eye disorders...it would be great help if somebody can guide me on which step to be taken...so that i can somehow improve my vision and lead a normal life...

all the best to everyone...

Regards,
Pankaj Arora

 
At 12:26 AM , Blogger Pankaj Arora said...

This comment has been removed by a blog administrator.

 
At 10:07 PM , Anonymous nita said...

Hi All....
U've got one more company. I am Nita, a 27 yrs old with high myopia from bangalore, India.I want to know which kind of contact lenses will be best for us whether a soft one or a hard (RGV) lens. As i was using soft lenes for last 1 yr but what my doctor told me this time that, it seems these lenses caused me some damage to my eyes due to lack of oxygen and the hard lenses are the best option for me even though i am not very comfortable with the hard one. This news is like a shock to me as i don't want any further vision loss. When i first started using lenses, i was very happy because i don't have to use those thick ugly glasses any long and ppls won't stare at me on the road as they use to do it before. I can lead a normal life without anyone knowing that am suffering from any kind of problem. But my last visit to the hospital have changed every thing. I am no longer the same person even though i brought up like any normal child, did all my studies ...and working like any other normal person and even started my PhD. this year. I am not sure how many more years i have in my hand, where i can live a normal life. I hate the thought of sitting in a room doing nothing and everything is totally dark around you. Please friend help me with my problem and if anyone knows any cure, pls do let me know and also about the contact lenses.

I will love to talk to anyone with same problem. U can write to me at nabanitasaha12@gmail.com

Hope & Regards,
Nita

 
At 4:57 PM , Blogger Simon said...

Hi Nita,

I wear soft contact lenses - my ophthalmologist often looks in my eyes to check that they are getting enough oxygen.

I'm now using a new soft lens that lets the eye breathe really well - the brand is Tailor Made made by Proclear.

Talk to your ophthalmologist about this and see what options are available to you.

 
At 5:05 AM , Blogger Nita said...

Thanks, Simon for your suggestion. I will definitely talk to my ophthalmologist about it.

Regards,
Nita

 
At 1:12 AM , Anonymous Anonymous said...

Greetings,

I have a message for the webmaster/admin here at myeyesdiary.blogspot.com.

May I use some of the information from this post right above if I provide a link back to your site?

Thanks,
Peter

 
At 5:48 PM , Blogger Simon said...

Hi Peter, please feel free to use any of the info I have published as you wish.

Thanks :)

 
At 6:00 AM , Anonymous Anonymous said...

hi, another company here. glad to know that lots of people outside there share the same problem with me. i do hv the same problems with all u guys, wearing a glass but still cannot see far thing clearly as a normal person. sometimes it makes me so depressed and feel so down since i now studying in biomedical field which really need a normal vision especially to see under microscope. actually this problem in a genetic problem since all my five sisters having the same problem. i always worry thinking about the future, whether i can work in the field that i studying now or not, and what is going to happen to my vision years after years. i pray to God not to worsen my vision, enough just up to this extent. hope u all will face this life with strength and may our problem will find a remedy one day.

 
At 3:37 PM , Anonymous Anonymous said...

Maybe you'll want to put a facebook button to your website. Just bookmarked this site, but I must do this by hand. Just my advice.

 
At 3:59 AM , Blogger janet said...

I was just diagnosed with deg. myopia. I have congenital nystagmus and very high myopia. Next month I have cataract surgery which is complicated because I had LASIK 15 years ago.
Does anyone know a good specialist in the Philadelphia area? Thanks.

 
At 5:47 PM , Blogger Simon said...

Hi Janet, i don't know of any good RS's in you area i'm sorry. Have you got your Cataract surgery booked in? What is your degree of myopia and how old are you? Look forward to your reply.

 
At 11:36 AM , Anonymous Anonymous said...

OMG!!!! I need to talk to you! I have horrible eye problems, and nobody understands!! I hate to say I have a disability but everyday I get closer to actually having to admit it. I can't drive, my job is sooooo bad that I've been hiding it the best that I can. Only time before they figure it out. I don't want to get fired and want to claim disability. I confess I haven't read your entire story, but after reading three lines I knew we had to talk. I need to talk to someone younger than 50 or 80. Sorry, but it's hard when you are younger, you have more responsibilities and if you can't see anything you can only do sooo much. If anything, I need moral support. My doctor is a dick and I'm in the process of finding a new one. I need to file disability, but my doctor is scared of the legalities of it. Maybe because he is use to working with 80yr old patients that don't work. Are you working?

 
At 12:40 PM , Blogger V said...

HI, I personally do not have high myopia . However my 2 yr old nephew was diagnosed with progressive degenerative myopia. As his family, it would be nice to know of any informations/tips/etc you may have to help him along the way. We havebeen looking online, and as you stated, motst with progressive yopia seem to be people over 50.

 
At 1:47 PM , Blogger Jenny said...

Hi, there! I too have congenital high myopia (-32 D), and am now in my 50's. I have nystagmus, diplopia,strabismus, and now clouding in my right (good) eye. I just read about the "buckling" proceedure being done here in the US--which I thought was only for wet macular degeneration and I think it's probably too late for me. My condition is not related to anything--it's a mystery. I have never been able to "read the board" at school, judge distances, or play organized sports--very important here! I have always been VERY independant--I horseback ride, bycicle, swim, sail, sew, paint in water colors, play guitar and sing and read. I love the outdoors and color and texture, and am a very visual learner. My eyes are slowly degenerating, and I hate it!

I have been unemployed for 6 years even though I hold a BA and MA in Education, Special Education, and hate that,too. I'm working on my second Masters--in Vision Rehabilitation Therapy which I hope will afford me full time employment and benefits. I want to be an active, productive, contributing member of society again!

And, yes, the social aspects are embarrassing and send mixed messages to people. They mostly want to "help", but it feels like being treated like a child again because my disability makes them anxious, and they want me to be where I'm safe. I struggle with the terrible public transportation systerm here (proliferation drops off exponentially with the reduction in population!). My life has been dramatically reduced--to that of a senior citizen, but I'm not OLD, (I can't be, I still have a 15 yr. old at home) and I'm not ready sit in my rocker yet!! I don't even OWN a rocker!!

I have waited all my life for a "cure" to be discovered or a magic-bullet treatment to be developed, but research is pretty thin out there. Right now, although degenerative high myopia is the ninth leading cause of low vision leading to blindness in America, there is little interest in researching the condition. I wish I had had your fire to get answers when I was your age. I trusted my doctors to know what was best for me; they always said..."wait". So I waited, and waited, and am still waiting...! But my eyes may be too fragile now to do anything surgically. I am in between worlds--can't see enough, but still see too much. Keep being fired up--get on the world wide web and see what's happening in the rest of the world with research, surgery, etc. I am just starting and I wish so that I had been more assertive at 23!

 
At 4:05 AM , Anonymous Anonymous said...

I'm 59, an engineer and 12 years ago lost an eye due to a macular hole, tears etc. after several vidreoctomies. My other eye continues to work so far altho it had a series of tears repaired by laser. I do have Myopic Degeneration, so no telling on the future. That eye is -16.5 D.

I've faced the liklihood of complete blindness repeatedly and still do.

Coping concerns seem a recurrent issue for others on this site. While you still can do so more easily, search for resources. Take classes on adapting, Get voice recognition software on your computer, Google "blind services", Lions Club. Get a phone with big buttons. Memorise your computer keyboard, learn how to adjust the screen for the view you need, like Control++ count steps, learn cues other than visual, organise your kitchen, know the contours of your house key until you can recognise it eyes closed and get it in the door.

Learn how to apply for disability or do so. Find friends that will help. Apply for a dog, It requires time! Find
ways to help others cope. There are lots of people in this boat and they need help, too.

Becoming blind generally seems to involve successive stages of losing vision. Learn to deal with it as soon as you can.

Has anyone tried the Visivite supplements?

Thanks for the into on Avastin. I haven't tried it but plan to ask.

 
At 6:24 PM , Anonymous Anonymous said...

hello to all i invite all of you to a group for people who have high myopia every one can be member of this group if you liked send me a massage on my facebook address and then i will invite you
http://www.facebook.com/cathrine.bamdad

 
At 6:29 PM , Anonymous Anonymous said...

hey
i invite you to become member of a group for high myopic people i you want leave me a massage on facebook then i will add you
thanks
http://www.facebook.com/cathrine.bamdad

 
At 10:02 AM , Anonymous Anonymous said...

Hi
I have a 12 year old daughter who has progressive myopia...doctors said they can't do anything for her and that she will continue to loose her vision as she grows up.. I do not understand what this eye disease means at all...can someone help please.. She was a minus 3 a year ago and is now at -12 in both eyes right now, she looses her vision atleast every month 1/2 and she's already complaining of blurry vision and not being able to see.. All your help will be greatly appreciated..Thank you

 
At 4:11 PM , Anonymous Anonymous said...

I too have high myopia -13 in both eyes and thought that it was weird to not let others know about my disability. I don't like to view it as a disability, but I guess that is what it is. I work full time in a profession that requires a lot of reading and interacting with people, so you can imagine how much strain that puts on my eyes. I wear contacts for most of the day and evening. I only wear glasses when I am ready to completely wind down for the evening. My right eye seems to be worse than my left with blackened visual distortions; but the opthamologist actually said that I have more floates in my left eye. (have them in both). My opthmalogist said that my eyes don't show signs of getting worse because my prescription hasn't gotten worse in about 9 years. I am extremely concerned about my future, my ability to continue working and to contribute to my family with young children. I can't even tell my husband about the little details about how tired my eyes are because I don't want him to worry. On top of that, I also have a turned in right eye and astigmatism, so that makes it worse. Thanks for reading and "listening".

 
At 8:48 PM , Anonymous Tina said...

Its so scary going for an eye test and afterwards when they tell you that vision has changed again like it has done every year since the age of seven. No one understands how bad it is and its embarassing to tell anyone. I feel so alone and thats the worst part. But I always listen to James Morrison's song..."one life" and I realise we have to live with whatever we have in the fullest way. Tina, 24, UK

 
At 10:02 AM , Anonymous Anonymous said...

Hi Lisa, I have just been talking to my parents about how frustrated I get with My eyes. I am 27 and have -20 and -19 in my eyes. I wear thick eyeglasses and get many confidence knocking comments from people.

 
At 9:43 AM , Anonymous Anonymous said...

more company, my daughter has recently been diagnosed with myopic degeneration.. she is six years old. we noticed a vision problem very early in her life and she has been wearing corrective lenses since 3yrs old. six months ago she had her exam no change, last week she had her exam and significant loss in her right eye. lefts not much better. i am scared to say the least but gearing up for the fight of both of our lives. there is a small sense of relief in knowing she is not alone but it hurts my heart more to know there are more people suffering with this horrible disease.

 
At 3:44 PM , Anonymous Ashy said...

Hi there my child is 3 years old and had been digonosed with high myopia now she has to ware glasses

 
At 5:51 AM , Anonymous Anonymous said...

Hi iits me again :-(:-(:-(:-(:-(:-(:-(:-(
its been 6 years since my comment post. my eye condition is slightly worse.
I see FLOATERS N FLASHES all the time. I AM USELESS.
But i now even suffer from DEPRESSION ANHEDONIA DYSTHYMIA
LACK OF MOTIVATION IN LIFE
SUICIDAL IDEATION.
I am not good at anything. I cant even ride a bike.
help me please ....

 
At 3:55 PM , Anonymous Anonymous said...

Hi Everyone! I came across this site trying to do more research on my eye condition. I am a 31 year old female with High myopia, migraine in the eye and I had laser for retinal tears last Summer (2012). I have constant pressure pain like a migraine in the eye I can see from where I have the myopia in and had the laser on. (right eye). Left eye is blind from being born premature of 3 months. Anyway, does anyone else have the huge eye pain? What are some ways you are able to take away the pain without taking like Ibuprofin which is the only medication that seems to take it away or breath techniques along with trying to not stress. As soon as I stress, wham! it hurts! Just wanted to know if similar people are having the same troubles. The vision in the good eye is also getting worse, hence the myopia. Seems every few months I need to get a new prescription. You can get back to me at: dolphinstr@hotmail.com Cheers all! Written Januaury 10, 2013.

 
At 5:24 AM , Blogger scubasteve said...

hi i am 18 years old probably going through the same thing you are. I pretty much live in constant fear of loosing my eye sight and not being able to enjoy life at a young age.I am constantly looking for flashes or black spots in my vision. Seeing other floaters scare me because i don't know if that may mean i may go blind. Honestly if something were to happen to my vision i probably would just want it all to end. my current prescription is 12 in the left and 12.25 in the right. care to share your prescription?

 
At 5:24 AM , Blogger scubasteve said...

hi i am 18 and i have extremely high mypoia i am extremely worried about loosing my vision. everyday i am on the look out for abnormalities in my vision. I am worried about loosing my vision at a young age and not being about to enjoy life and honestly if it were to be gone i would wish it all to be over. my prescription on my eyes are 12 in the left and 12.25 in the right very expensive contacts just because of my vision.

 
At 4:13 AM , Anonymous Anonymous said...

I am annonymous again . i am severely depressed since many years. i dont want to do anything in life. just want to die. bye.

 
At 10:33 AM , Anonymous Anonymous said...

You need to go to the ER dept You arent worthless or useless.

 
At 2:19 AM , Anonymous Anonymous said...

what will i do after going to ER ?? I've been to multiple doctors with hope but they all dismissed saying my eye condition is genetic and i'll have to live with it. this condition didnt let me understand my own personality. i dont know what i like and dislike. i dont undersand myself.
just in a constant state of depression since 10 years. i am 30 now. just want to end it all. bye bye bye.

 
At 12:02 PM , Anonymous Anonymous said...

More company
I hv high myopia with -22 and -21 in the left n right eye respectively
I wear thick lenses. It embarasses me evn more when ppl comment when I read anything close to my eyes.
Im 20 yrs old. My power is increasing rapidly. I constantly feel I might end up losing my eyesight sooner or later...
N 1 question??
Are there contact lenses with such high power available n if available do they hav any adverse effects???

Thanks!

 
At 7:54 PM , Blogger Simon said...

Yes you can get contact lenses in that power, go and see an Optometrist.

 
At 9:02 AM , Blogger Rajat Mann said...

hello.I wear prescription glasses of 19 in both eyes and i am 21. and i feel just terrified to know that its gonna get worse. Dont know what to do about it.

 
At 2:26 AM , Anonymous Lao Lianjie said...

This comment has been removed by a blog administrator.

 
At 3:54 PM , Blogger Amanda said...

I know how you feel, about being the youngest in the waiting room. When I was 23 I woke up a day after I had dental work to loss of vision in my right eye. I went to get it checked and was sent to the hospital to see the opthmologist. Feeling like a guinea pig they wrongly diagnosed me and I spent hundreds on these pills. I went back to see the specialist telling him my eye was getting more fuzzy with loss of vision. They finally saw I had bleeding in my eye near my 20/20 vision. At that point I was treated with a few treatments of Avastin. I never fully got my sight back but it is a lot better than before. Going through the loss of vision for 6 months + was rough with friends and family there to support you but have no understanding what you go through. I usually end up with bruises on my right side as I run into stuff and have a bad judgement of distance. Now at age 25 I found out my retina is detaching.. We are so lucky to be going through this with the ever evolving of new medicine.

 
At 3:10 PM , Blogger Luna Magenta ~ said...

Hello there, let me tell you something, you are not alone. I'm 23 and my myopia is high, I'm still not sure how high it is because I have found a way to avoid reading on my eye checks or I just don't ask the doctor, I find it annoying and sad. You see I suffer thinking I might lose my vision or how extra careful I have to be with my eyes. I hate being at the beach and depend on my glasses. but knowing that there is more people out there that know what this is , makes me feel a little stronger because they understand, you understand and we will get over this... Keep strong!

 
At 8:19 AM , Blogger Ninja Prince said...

This comment has been removed by the author.

 
At 3:58 PM , Anonymous Anonymous said...

I'm so glad I found this site!
I'm an 18 almost 19 year old female & my prescription is -8.25, as of today.
So far my eyes have been healthy. I have been tested for glaucoma last year & nothing yet. I asked my optometrist why my prescription is so high & all he said was that "I'm growing". I'm very scared for what it will mean when I am older. He made me put these eyedrops in to dilate my pupils so he can look at them & so far my eyes are healthy, thank God.

I'm very fed up with having to wear glasses & contact lenses every day. One day I want to wake up with perfect vision, but we all know the world doesn't work that way. I'm a university student & some days are very long & tiring, which is exhausting for my eyes. Luckily I'm a little shorter so I don't disturb people when I sit at the very front of the class.

Are there any lifestyle changes that I can make regarding my diet & what not that will help me improve or at least stabilize my eyesight? I have a passion for art & design & it would absolutely break my heart if I could not experience it.

Thanks.

L

 
At 12:47 PM , Anonymous Anonymous said...

Janet, great retina specialist in Phila area affiliated with Wills is Dr Vicent Sardi. The only reason I can see today is due to his excellent work. From tears to detachments he has saved my vision. I have high myopic macular degeneration. Have had laser surgeries, cataract surgery and some surgeries I can't even spell. For many years I have not really asked questions..I just leave it to my dr..I guess I just don't want to think to into my problems cause then I will just worry...so far I have been very lucky..

 
At 2:58 PM , Anonymous koryn said...

i am 48 father of two. I have had a macular hole in right eye with two unsuccessful surgery and my left eye has a minor sub retinal bleeding and being monitored till next week. This is on eye disease that there is no cure at this time except for injection of lucentis if you have bleeding in the eye or CNV they call it. My experience with this disease is that no one understands except people in this blog and it does cause depression, but life goes on and with good people around you that will give you emotional support and love makes a big difference. i am very happy that you started this blog and i wish all of you a happy thanksgiving. what helps me get throughout the days are laughing at this disease and keep my self occupied with other things. anything. be strong, never stop living. just communicate. don't be afraid to consult or go to therapy. its ok to let it out.

 
At 5:55 AM , Blogger Unknown said...

Hey guys....i too have high myopia ..its -7.50D right eye and -7D left eye..and I was assigned this prescription just in april this year but still I feel this prescription is wrong since I cannot see very far clearly..however the important thing is I got specs at -5.50 D��..and in the lasttwo years I have had a loss of around -2.50D..my doctor says till the age of 18 it grows but it will eventually stop..i became 18 this year and feel that my vision has decreased...i am scared..he has recommended Lasik...but I knw there will be some sideeffects tooo...is there anyone out there those who have had lasik????I pray to god to maintain my vision ..i dont know out of the feeling that I will become blind some day...i dnt to,become blind����....plz help...i am a university student studying physics...the doctor says too much of study also leads to strain and hence causes decrease in the eyesight...plz let me knw if lasik is useful.....i can only get it done when my eyes become stable

 
At 3:53 PM , Blogger Shakhida Dimitri said...

Hi i am 34 years old mother of 2 beautiful kids. .i have eye problem too....suffering. .so scared. .the future. .what's gonna happend. .are we going to get blind. ..Is there any hope. I just belive one power its God. May be we can all pray together. .he is so powerful. .i looking for any hope. .

 
At 7:15 PM , Anonymous Anonymous said...

A part of me wishes I hadn't googled "will my progressive myopia blind me?" I feel afraid to live, to watch tv, to work, afraid to leave the house without sunglasses. I just had an eye exam and my right eye is worst.

I had a scheral buckle and cryotherapy in my left eye due to a retinal detachment following natural the birth of my 4th child. Many holes were repaired in both eyes. I was myopic with -4 in both eyes and L-7.00 R-4.00 post op (May 2014. Now my vision is L-7.00 R-4.50.

I wear contact lenses regularly, Acuvue Dailies for Astigmatism. I fall asleep in them sometimes and wake up in a panic.

What can we do to promote healthy eye care? I am 30 years old and I want to see my grandchildren one day. This is the scariest thing ever. My migraines are gone and I am afraid that I won't even see my blindness coming because the symptoms will be mild. My right eye has gotten worse over the last year and I didn't even notice it happening.

I feel like I don't have much time to live life. Blindness terrifies me and I know that I couldn't do it. My vision loss from my detachment was very minimal but I wasn't warned by my surgeons or ophthalmologist of what will come next, what my eye sight can become.

I know my God is awesome but I really pray that blindness is not something that He wants me to handle. It is way more than I can bare.

None of these post are dated, so hopefully this helps someone. wubbieswonders@aol.com
April 18, 2015 (13 months post detachment and surgery)

 
At 3:13 AM , Anonymous Anonymous said...

Hi everybody, I,m in the uk, i,m 55 and had poor vision all my life my prescription is now -27.5 in both eyes, the vision in my left eye is far worse than the right, a few years ago my eye specialist recommended using a white cane when out and about, but I was too embarrassed so it used to stay in my pocket or folded up tucked under my arm, nowadays I,m really struggling to see anything but shapes and shadows so i,ve started to use it in my local community, but even now some friends and family don,t know I use a cane, I,m so embarrassed and scared to let people know I,m becoming dependent on my cane, I,m so scared of going totally blind. Davenorman1@live.co.uk

 
At 4:48 PM , Anonymous Anonymous said...

Hi all, Jordeen here. January 21, 2016. I live in the USA, California. I have been highly myopic since about age 11. My glasses are the last thing off at night and the first thing on in the morning. Two years ago I lost the vision in my left eye due to Myopic Macular Degeneration. I am 56, so I am a bit older than most of the new writers. For the last two years I just tried to deny that according to the three different opthamologist and one absolutely fantastic optometrist "It's not a matter of if, it's a matter of when.
I woke up one morning about three months ago and said to myself there has to be a way to live productively with this condition. I called Lighthouse for the Blind (Maybe only in the USA) and asked for help. The kind receptionist told me to get into contact with the Department of Vocational Rehab. I have been to two appointments so far. One with a casework/counselor and one with an "adaptive technologist(AD)." She asked me questions about what I do day to day. Then she showed me the new technology that is out right now. I was surprised to learn about some of the resources. Especially the Pebble Magnifier. Look it up. The next three will be with a counselor who will help me obtain a job according to my skills and experiences.
I have a supportive spouse and family. I work in a field where I am required to have good vision. I will be resigning soon or be medically retired, then I will start a new career. I do not want to be dependant and I am going to do everything possible to continue to live life to the fullest. Do what the 59 year old engineer at the middle of this blog said. Starting learning new ways to do things. Yes I have bad days, and they are BAD.
Think about this, we did nothing wrong to get this poor vision. I have 9 siblings, I am the only one with this problem. One opthamologist said, "Luck of the draw." Yes, like one of the earlier bloggers said, "People don't understand because they cannot see a disability." But, we know what we can or can't see. My lifestyle had changed immensely. If you have questions, email me at lovemyblacktruck@hotmail.com
Hope this helps. PS. My favorite thing to do since about age eight has been to sew, design, and do any anything creative and artistic. Slowly, but surely I am give up my passion, but I will develop a new one, somehow, someway. We can survive this and live wonderful and fulfilling lives.

 
At 6:01 AM , Anonymous Anonymous said...

I have been wearing glasses since i was 3yrs. I am 30 now and a mom of a 3 month old. I had -9 and -17 in left and right eye respectively. 3 yrs back i had lasik in left eye and lens implantation in right eye..life could never be better. .i was free of glasses. .but recently i started having blurry vision. .it's back again. .-4in right eye and -1 in left eye. .I have a -18 lens in my right eye already and so it means my right ete is now -22..i am so afraid. .reading all the comments it makes ne think that i shouldn't have had any of the treatment in my eyes. .may be i messed them up..will i be blind in the coming years? Are there any natural ways to cure this. .sny exercises, food or supplements?

 
At 8:01 AM , Blogger Unknown said...

Im very thankful that I find this blog. Im 32 y o with congenital myopia, having -29D in both eyes. From what I understand this is a extreme rare condition. I now most of you maybe suffered from progressive eye conditions. So have I but in a way mine is quite stable since I was born with it, anyway thats what I have understand scanning the web for information.

However six months ago I got my first real bleed. I damned myself cause I noticed a tiny black dot 9-10 months prior but didnt tell my eye doctor about it. Ive got this tiny dots before and always got to the doctor as quickly as possible. Each time they have said its not CNV and the dot will eventually disappear by itself. So I wasnt that alarmed when I noticed a new dot. But I got a leakege dropped me from seing the forth line to barely see the secound line. Even if I received a shot of Avastin a scar developed in macuala. Now I cant really read with my right eye.

I also have cataracts in my left eye. Im not that worry about that since it most likely can be corrected with a hard contact lense.

Of course Im worry about my long term eye health. Even if Im borned with a extreme myopia my vision has just have small changes until now. Like I said I cant really find any research or long term outcomes with congenital myopia. And Im not sure how similar it is with degenerative myopia? Anyway if someone with congenital myopia is reading this, or anybody else for that matter I would love sharing experiences and knowledge with you. Please contact my email: Fredrik.hasselgren@gmail.com.

 
At 9:58 PM , Anonymous Anonymous said...

i am late in this discussion.i too have high myopia & love to talk with people suffering from same condition.mail id: ronney352@gmail.com

 
At 12:06 AM , Blogger Unknown said...

-4 is not even severe myopia. You are commenting amongst people with diopters in the -20+ range. It's quite insensitive of you. Some of us live with far worse than a -4 lag *with* correction so please be understanding of that.

 
At 8:49 AM , Blogger Hari Patel said...

This is exactly how i feel word to word this is my story
I am still in college and in computer field

 
At 2:50 AM , Anonymous Anonymous said...

Hi Pankaj.. I am from India too...and was wondering if we are medically fit for any job here..at present ia m pursuing Phd...

 
At 7:40 AM , Blogger Unknown said...

Hi. Same here. I had -19 D. My eyes are very elongated. Its not normal and I feel like I look like alien with there bulgy eyes. This is all because of the high myopes.did you consider eye lasik? Prk or Phakic iol? Im loosing hope here. Pls keep in touch with me

 
At 7:42 AM , Blogger Jess said...

Hi. I am also suffering with high myopia. I got -19D and I notice floaters and flashes in my eyes. Like you i am afraif one day I will not be able to see things. May i know if your doctor recommended u eye lasik, prk or phakic? Im loosing hope here. Pls keep in touch with me.

 
At 3:46 PM , Blogger shweta said...

I too have high myopia...My right eye is -14D and left eye is -10D.i have been using contact lenses and specs from last few years...recently got my eye tested and my doc gave me the prescription for -14D...I m not very sure if one gets contact lenses for -14D..I hope I do...I am a bit sceptical about getting laser surgery.I love travelling but it becomes difficult being at the beaches and trekking depending on my glasses.Knowing that there are people out there who knows also can understand how I feel..Gives me strength...I hope modern medicine comes up with something which would benefit each one of us and help us to live a better life.

 
At 3:58 AM , Anonymous Anonymous said...

Well I was feeling very sad today becausw of my very high eye power... Yes m having myopia...m jus 18 n eye power has crossed a line....n m even frightened to tell it to anyone...its true that nobody understands this problem but only those who r suffering from the same condition.Even though m nit having any other complications.. Perfect retina.. But still I feel bad...OK nowadays there are so many advanced technologies like lazor treatment..but Dr said that the no.has surpassed limit so I will not b able to undergo lasic surgery..OK there are other treatments as well but still its all about eyes!!u can't b 100% sure...right? Yeah I feel depressed but only few of the times..but during that time I feel so 😣 helpless.
Thanks...now I got 😌 relieved.

 
At 12:05 PM , Blogger Unknown said...

Hi

I have had myopia -28 and nystagmus all my life but two weeks ago I found out I have cataract. I am broken. How wil they laser my eyes when my eyes doesn't keep still. I am waiting to see the eye doctor but right now, I am in bits because losing my eyes are my worst fear

 
At 12:11 PM , Blogger Nicky Ojikutu said...

Hi

Did you find any help for your 3rd grade student? If not, feel free to email me nicky.ojikutu@googlemail.com. I have suffered with high myopia all my life. I am currently-28

 
At 12:17 PM , Blogger Nicky Ojikutu said...

Hi

My name is nicky and I have a similar problem to you. I have had high myopia and nystagmus all my life. I was doing well, working, going out and so on even though my high myopia is -28. But recently I found out I had cataracts which brought me to my knees. If you ever need support with finding the right aids please free to email me. My email address is nicky.ojikutu@googlemail.com

 
At 3:34 PM , Blogger Bharat said...

I'm too having High Myopia. I'm -12. It's not that worse , I can see things with very thick glasses but I'M scaring it will become worse over time. I'm only 15 now.
Please all of you guys make a whatsapp or Facebook group so that we can learn from rath other to live iN This CrueL World who make fun of us.

 
At 9:53 AM , Anonymous Anonymous said...

Just found this blog when searching for myopic degeneration. My close relative has this. Are there any vitamins and medicines available to stop further damage. Also internet says bilberry and saffron pills help in this case. Any info on that? Pls share.

 
At 6:09 AM , Anonymous Anonymous said...

i have high myopia -12 in left -25 in right eye also treated with avastin and gas bubble for cnv in right eye. I HAVE 2 BIGGEST FEARS
my own eye can develop mmd in left or good eye as well ,glaucoma also scares me
also i dont want my kid to have this problem

 
At 12:16 PM , Anonymous Anonymous said...

I join the chorus in being happy to have found this site. Have any of you heard of Brian Ward or tried his surgery? I"m seriously considering it ...

 
At 12:17 AM , Anonymous Anonymous said...

Its my problem too i m a nurse and i had to resign just due to sudden onset of coroidal neovascular membrane and my vision droped to 20/80. I dnt knw hw will i get through it.

 
At 5:56 AM , Blogger Unknown said...

I suffer from it too :( can't afford contacts or glasses and it sucks! :(

 
At 4:23 AM , Anonymous Anonymous said...

Hello,
I started in life with ok eyes. Started with glasses at age 8 and eyes kept getting worse and worse.
Technically high myopia because over -6 D, left is -14 D and right -12D. Today found out I have degenerative myopia and retina is tearing in my left eye. They are doing comparison of my eye photos at the hospital, I guess to give me an estimate of how long I have before I go blind. So I’m supposed to go back to retina specialist in a month.

Maybe I’m in denial as I told my husband, let’s not tell the kids just yet because they are young and I don’t want to heap worry on them. I’m sad too because my dad is getting older and I was planning to move close to him in ten years or so to help him out around the house. But it’s looking like I’ll be uselessfor that...so who will take care of him?

Then I read this is associated with maternal alcoholism. My mum was a raging alcoholic. She bragged she drank through all her pregnancies. She went into labour for me on her birthday but wasn’t going to forgo her favourite daiquiris so she smuggled them in a thermos and was literally drunk while giving birth to me. One of my brothers was born with Fetal Alcohol Syndrome. I thought I’d dodged a bullet looking after him, but I guess I’ve been hit with a different one. Thanks mum!

I feel so sad, I don’t know how I’ll live if I can’t see anything. But I guess I should be grateful for everything I have seen.

 
At 8:15 PM , Blogger Unknown said...

Hi nita
I'm heather and have had degenerative myopia my whole life also recently had retina problems and cataracts. But, when I was able to wear contacts, the Gas permeable hard lenses were the best once your eyes get used to them. They also ended up saving me alot of money in the long run if my eyes weren't changing.
Wish you the best!

 
At 3:38 PM , Blogger Eden Lowe said...

Hi, I'm Eden, and I am 14 years old. I have progressive myopia, and it is getting so bad that I'm under a list of teenagers the government is funding. I will be funded until I am 16, then I am on my own essentially.
Tomorrow I have an appointment at a proper myopia clinic to assess the damage. I am really scared, which is weird for me because I've been going to optometrists since I was 5 and they used to comfort me.

 
At 3:39 PM , Anonymous Anonymous said...

Hi, I'm Eden, and I am 14 years old. I have progressive myopia, and it is getting so bad that I'm under a list of teenagers the government is funding. I will be funded until I am 16, then I am on my own essentially.
Tomorrow I have an appointment at a proper myopia clinic to assess the damage. I am really scared, which is weird for me because I've been going to optometrists since I was 5 and they used to comfort me.

 
At 3:23 AM , Anonymous Anonymous said...

whoah this weblog is great i like reading your articles.

Stay up the good work! You recognize, lots of people are searching around for this information,
you can aid them greatly.

 

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