WORTH A THOUSAND WORDS: PRESERVE YOUR VISION - CNIB

WORTH A THOUSAND WORDS: PRESERVE YOUR VISION

CONTENTS

5 INTRODUCTION 6 FOREWORD 8 MEMORIES WORTH A THOUSAND WORDS 32 WET AGE-RELATED MACULAR DEGENERATION (AMD) FACT SHEET 34 DIABETIC MACULAR EDEMA (DME) FACT SHEET 36 CNIB: OUR SERVICES

This CNIB campaign is a collaboration with one of Canada’s leading research-based pharmaceutical companies.

INTRODUCTION For many of us, life experiences are

wet AMD and DME. This provides the

imprinted in our minds as visual

viewers with the chance to appreciate

memories. But have you ever stopped to

how someone who is living with these

think about how Canadians who are blind

conditions might see the world – a

or partially sighted ‘see’ their memories?

chance to see things from another

If you couldn’t rely on photographs to

point of view.

enhance your remembrances, how would you see the world? What would your point of view be?

The goal of this project is to educate Canadians about serious eye diseases and conditions and their impact on

This memory album was developed by

those affected. It is also important for

CNIB to give Canadians an idea of what

Canadians to realize that the earlier

the world may look like to people with wet

an eye disease is detected, the greater

age-related macular degeneration (AMD)

the chance of preventing or minimizing

and diabetic macular edema (DME), two

associated vision loss.i

common eye diseases in Canada.

Above all, this memory album is

The photographs in this album depict

intended to provide Canadians with

scenes from the lives of everyday

the opportunity to see things from a

Canadians over the past several decades.

different point of view and demonstrate

However, the images have been digitally

the importance of being proactive

altered to look as they may appear

about your vision health.

to people whose vision is affected by Impact of early detection on AMD at CNIB, Eye Conditions, AMD Diagnosis and Treatment (accessed on Oct. 23, 2013 at: http://www.cnib.ca/en/your-eyes/eye-conditions/eye-connect/AMD/Diagnosis-and-Treatment/Pages/default.aspx) and at AMD Alliance, Prevention and Early Detection (accessed on Oct. 23, 2013 at: http://www.amdalliance.org/information_prevention.html) Impact of early detection on DME at CNIB, Eye Conditions, Diabetic Retinopathy Diagnosis and Treatment (accessed on Oct. 23, 2013 at: http://www.cnib.ca/en/your-eyes/eye-conditions/eye-connect/DR/DiagnosisTreatment/Pages/default.aspx and at Centers for Disease Control, Eye Disorders, Diabetic Retinopathy (accessed on Oct. 23, 2013 at: http://www.cdc.gov/visionhealth/basic_information/eye_disorders.htm)

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FOREWORD FROM CNIB Every 12 minutes, someone in Canada

AMD is a progressive condition that

CNIB is excited to be collaborating

begins to lose their vision.i But behind

attacks central vision and is the leading

on this innovative campaign to raise

that impersonal statistic lie very

cause of severe vision loss in people

awareness among Canadians about eye

personal stories, each in their own way

over 60 years of age in Canada.iii

diseases and their impact, so they can do

exemplifying how vision loss changes

Approximately 1.4 million Canadians

more to protect the health of their eyes.

lives forever, right down to the little

have some form of AMD (wet or dry),iv

We are hoping that seeing what some of

things we often take for granted –

many of whom may no longer be able

life’s most memorable moments might

things like reading, traveling

to read, drive, or see the faces of their

look like through the eyes of

independently, and seeing the faces

family members. The personal, societal

those affected by AMD and DME will

of our family and friends.

and economic costs of AMD can be

help demonstrate the importance of

devastating. Unfortunately, more than 75

vision health.

Most major eye diseases are age-related, and because our population is aging, more Canadians than ever are at risk of losing their vision. But did you know

per cent of Canadians aren’t familiar with AMD at all, so may not be taking steps to reduce their risk.v

One in seven Canadians will develop a serious eye disease in their lifetimevii – affecting the way they see and

that 75 per cent of vision loss can be

DME affects people with both type 1

experience key milestones throughout

prevented or treated if detected early?ii

and type 2 diabetes, and can cause

their lives. Make sure you have all the

That’s why it’s important to increase

significant vision loss. The best method

facts to know if you are at risk. Visit us

awareness about conditions like age-

of prevention is to keep your diabetes in

online at cnib.ca for more information.

related macular degeneration (AMD)

check by ensuring blood sugar levels are

and diabetic macular edema (DME).

under control, by staying active, eating

Each of these conditions has risk factors

a healthy diet and taking your medicines

that can be addressed to reduce the

as directed.

Keith Gordon, Ph.D., Vice President, Research, CNIB

vi CNIB, Seeing Beyond Vision Loss, at: http://www.cnib.ca/en/your-eyes/Pages/default.aspx CNIB, “Seeing Beyond Vision Loss,” Your Eyes, at: http://www.cnib.ca/en/your-eyes/Pages/default.aspx and World Health Organization, Global Programming Note 2006-07, Blindness, at: http://www.who.int/nmh/donorinfo/chp_blindness_update.pdf iii Buhrmann R et al. Foundations for a Canadian Vision Health Strategy, Report for the National Coalition for Vision Health, 2007, p.13, at: http://www.visionhealth.ca/projects/documents/Foundations-For-A-Canadian-Vision-Health-Strategy.pdf iv Buhrmann R et al. Foundations for a Canadian Vision Health Strategy, Report for the National Coalition for Vision Health, 2007, p.61, Table A1.1, at: http://www.visionhealth.ca/projects/ documents/Foundations-For-A-Canadian-Vision-Health-Strategy.pdf .. v CNIB, Fact Sheet, Age-Related Macular Degeneration (AMD) at www.cnib.ca/en/news/archive/Documents/AMD_Fact_Sheet.doc vi National Eye Institute, Facts about Diabetic Retinopathy, Treatment, How is diabetic retinopathy treated? at: http://www.nei.nih.gov/health/diabetic/retinopathy.asp vii CNIB, Study reveals many Canadians unnecessarily living with vision loss, Press release, May 8, 2012. i

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likelihood of developing them. 6

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THOSE LONG AND LAZY DAYS OF SUMMER HOLIDAYS “When the boys were young they could spend hours in the water at the beach on summer holidays, sometimes even without being in constant motion! The days never seemed to end.”

DME

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SHOULDN’T SHE BE THE ONE SITTING ON THE KNEE? “There’s nothing like sea air and time to relax to rekindle a romance, but fortunately our love never seems to flicker out. We enjoy being with each other wherever we are!”

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LOTS TO BE THANKFUL FOR “Traditions are what make holidays special, and nothing says Thanksgiving more than a turkey dinner with all the trimmings. What makes it really special, though, is who’s around the table.”

DME

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TAKE ME TO GRANDMA! “It’s not that Grandpa has bad shoulder-carrying technique, but sometimes the warm embrace of Grandma’s arms is just too tempting to resist!”

WET AMD

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WHY DO THE KIDS ALWAYS SEEM TO WIN? “We grew up with the saying that it’s not whether you win or lose that counts, it’s how you play the game. The best part of a game with grandchildren is, quite simply, the playing!”

DME

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IT DON’T MEAN A THING, IF YOU AIN’T GOT THAT SWING! “Rock n’ roll and modern dancing has its merits, but for the full experience of great music and great dancing, for my money there’s nothing like the swing dances of our youth! We went all out – and all night!”

WET AMD

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LIVING THE SUBURBAN DREAM! “What more could we have wanted in life than to be new parents with a new house in a new suburb, and our own car in the driveway? Those were the days – the future seemed endless!”

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A PROUD MOMENT FOR ME, AND MY FAMILY “My university graduation was a very special moment. I was so proud as the first woman in my family to graduate from university! I was kind of sad to say farewell to a place I really enjoyed, but couldn’t wait to head out into the ‘real’ world.”

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WET AMD

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WHO KNOWS WHAT THE FUTURE WILL HOLD? “Weddings are such emotional moments as two lives and two families are brought together and no one has any idea what the future will hold. All we know for sure is that lives will be changed forever.”

DME 24

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SHINNY TIME OR PARTY TIME? “We told our parents we were just going out to play some shinny on the frozen lake with friends, but it was much more than that

WET-AMD

– it was a major social event!”

WET AMD

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WHEN THE SUN WENT DOWN, THE ACTION REALLY STARTED! “The drive-in theatre was a big part of my youth – and my education about both the big wide world portrayed in the movies and about the opposite sex!”

DME

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WET AMD

FOR KING AND COUNTRY “I’m proud of my family’s contribution to defending our freedoms and always thankful for their sacrifices for our benefit. They really did ‘Pay it forward’ – with their lives.”

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• FACT SHEET

WET AGE-RELATED MACULAR DEGENERATION (AMD)

early, can prevent or slow down the progression of vision loss and in some cases improve vision.

WET AMD •

Age-related macular degeneration (AMD) is the leading cause of severe vision

PREVALENCE

loss for Canadians over the age of 60.i There are two types, wet and dry. While

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It is estimated that 1.4 million Canadians have some stage of AMD.ix

only 10-15% of AMD cases are of wet AMD, wet AMD is responsible for 90% of the

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A 2011 study estimated that nearly 90,000 Canadians had vision loss from AMD

severe vision loss caused by AMD.

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Wet AMD is considered advanced AMD and is preceded by dry AMD.iii

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Wet AMD occurs when abnormal, fragile blood vessels growing under the macula

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Treatment options are available that, particularly if the condition is discovered

in 2007.x •

It is anticipated that the number people with AMD will double within the next 25 years due to the ageing of the population.xi

– the central part of the retina – leak fluid or blood which, when it accumulates

RISK FACTORS

in the macula, leads to swelling and the development of scar tissue on the retina,

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The exact cause of wet AMD is not known but, as the name suggests, risk

resulting in blurred, distorted and loss of central vision.iv

increases with age, with almost all severe cases in people over age 60. Other

AMD often progresses slowly, but dry AMD can change to wet AMD at any time,

known risk factors include smoking (doubling the risk), race (Caucasians are

then causing often rapid deterioration of vision in one or both eyes.v

far more likely to get AMD than those of African descent) and a family history of AMD. An unhealthy lifestyle (diet and exercise), high blood pressure and

The loss of central vision and blurring or distortion of vision can severely

abnormal cholesterol levels can also be risk factors.xii

compromise a person’s ability to perform everyday activities like seeing faces, reading and driving.vi SYMPTOMS •

There are few symptoms of dry AMD in early stages; as it advances vision could become blurred or not as bright, requiring more light to see things. As it

Buhrmann R et al. Foundations for a Canadian Vision Health Strategy, Report for the National Coalition for Vision Health, 2007, p.13, at: http://www.visionhealth.ca/projects/documents/ Foundations-For-A-Canadian-Vision-Health-Strategy.pdf AMD Alliance International. AMD Information: Basic Facts. http://www.amdalliance.org/information_overview_basic_facts.html iii National Eye Institute, Facts About Age-Related Macular Degeneration, What are the forms of AMD that can cause vision loss? and Can the dry form turn to the wet form? At: http:// www.nei.nih.gov/health/maculardegen/armd_facts.asp#1 iv National Eye Institute, Facts About Age-Related Macular Degeneration, What is wet AMD? At: http://www.nei.nih.gov/health/maculardegen/armd_facts.asp#1 v National Eye Institute, Facts About Age-Related Macular Degeneration, What are the forms of AMD that can cause vision loss? and What is wet AMD? At: http://www.nei.nih.gov/ health/maculardegen/armd_facts.asp#1 vi National Eye Institute, Facts About Age-Related Macular Degeneration, Loss of vision. At: http://www.nei.nih.gov/health/maculardegen/armd_facts.asp#1 vii National Eye Institute, Facts About Age-Related Macular Degeneration, What is dry AMD? and What are the symptoms? At: http://www.nei.nih.gov/health/maculardegen/armd_facts. asp#1 viii National Eye Institute, Facts About Age-Related Macular Degeneration, Wet AMD, What are the symptoms? At: http://www.nei.nih.gov/health/maculardegen/armd_facts.asp#1 ix Buhrmann R et al. Foundations for a Canadian Vision Health Strategy, Report for the National Coalition for Vision Health, 2007, p.61, Table A1.1, at: http://www.visionhealth.ca/projects/ documents/Foundations-For-A-Canadian-Vision-Health-Strategy.pdf . x Cruess A et al. The cost of vision loss in Canada. 2. Results, Can J Ophthalmol 2011:46:315-318. (Methodology for prevalence calculation presented in Gordon K et al. The cost of vision loss in Canada. 1. Methodology, Can J Ophthalmol, 2011:46:310-314). xi CNIB About AMD: Available at http://www.cnib.ca/en/your-eyes/eye-conditions/eye-connect/AMD/About/Pages/default.aspx from Cruess A et al, The cost of vision loss in Canada. 2. Results, Can J Ophthalmol 2011;46:315–318 at: http://www.visionhealth.ca/news/Cost%20of%20Vision%20Loss%20Results.pdf xii National Eye Institute, Facts About Age-Related Macular Degeneration, Who is at risk? At: http://www.nei.nih.gov/health/maculardegen/armd_facts.asp#1 i

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progresses, there could be a dark spot in central vision that can get bigger.vii •

With wet AMD, straight lines may appear wavy and a blind spot can develop, resulting in the loss of central vision.viii

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FACT SHEET

DIABETIC MACULAR EDEMA (DME) DIABETIC MACULAR EDEMA •

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PREVALENCE •

Diabetic macular edema (DME) is a common complication of diabetic

2.5% of the nearly 2.4 million Canadians with diabetes, or approximately 60,000

retinopathy. It is caused by damage to the blood vessels of the retinai and is a

Canadians, making it a major cause of adult-onset vision loss.ix

leading cause of vision loss in the working-age population in the developed world.ii

RISK FACTORS

When the blood vessels in the retina swell and leak, the leaking fluid can cause

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retinopathy.x Obesity and smoking are important risk factors for developing type

sharp vision is determined.iii

2 diabetes.xi

Macular edema – swelling of the macula – can then result in blurred vision and

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While everyone with diabetes is at risk of developing DME, progression of diabetic retinopathy can be assisted by controlling blood sugar (glucose) levels, blood pressure and blood cholesterol levels.xii

While it can occur at any stage of retinopathy, macular edema is more likely to occur as the disease progresses.v

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To protect against vision loss, everyone with diabetes should get a dilated eye exam once a year.xiii

SYMPTOMS •

People with either type 1 or type 2 diabetes are at risk of developing diabetic

swelling in the macula, the central part of the retina at the back of the eye where

can lead to permanent vision loss over time.iv •

It is estimated that vision impairment resulting from DME affects approximately

The first symptoms of DME are usually blurry vision and/or “floaters,” spots in the line of vision.vi

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Sometimes vision will clear without treatment and then reoccur. Treatment should be sought at the first sign of vision difficulties.vii

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Visual impairment due to DME compromises patients’ ability to perform activities such as working, reading and driving and can lead to blindness.viii National Eye Institute, Facts about Diabetic Retinopathy, Diabetic Retinopathy Defined at www.nei.nih.gov/health/diabetic/retinopathy.asp Ciulla TA et al, Diabetic Retinopathy and Diabetic Macular Edema: Pathophysiology, screening and novel therapies, Diabetes Care 2003:26:2653–2664 National Eye Institute, Facts about Diabetic Retinopathy, How Does Diabetic Retinopathy Cause Vision Loss? at: http://www.nei.nih.gov/health/diabetic/retinopathy.asp iv Ibid. v Ibid. vi National Eye Institute, Facts about Diabetic Retinopathy, Symptoms and Detection, at: http://www.nei.nih.gov/health/diabetic/retinopathy.asp vii Ibid. viii Ibid. ix Prevalence rate of vision loss from DME among diabetics (2.56%) from Petrella, RJ et al, Prevalence, demographics and treatment characteristics of visual impairment due to diabetic macular edema in a representative Canadian cohort, J Ophthalmology, 2012:Article ID 159167, 6 pages, applied to number of Canadian diabetics (2.4 million) from Public Health Agency of Canada, Diabetes in Canada: Facts and figures from a public health perspective, Ottawa, 2011, p.4. x National Eye Institute, Facts about Diabetic Retinopathy, Who is at Risk for Diabetic Retinopathy at: http://www.nei.nih.gov/health/diabetic/retinopathy.asp xi Public Health Agency of Canada, Diabetes in Canada: Facts and figures from a public health perspective, Ottawa, 2011, p.5. xii National Eye Institute, Facts about Diabetic Retinopathy, Treatment, at: http://www.nei.nih.gov/health/diabetic/retinopathy.asp xiii Ibid. i

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Treatment options are available that, particularly if the condition is discovered early, can prevent or slow down the progression of vision loss and in some cases improve vision.

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CNIB: OUR SERVICES CNIB is a registered charity, passionately providing community-based support, knowledge and a national voice to ensure Canadians who are blind or partially sighted have the confidence, skills and opportunities to fully participate in life. To do that, our dedicated specialists work with people of all ages in their homes, communities or local CNIB offices – providing emotional support and personalized rehabilitation services in everyday skills. Our staff help clients access counseling services, recreation programs, and connect with others who understand the impact of vision loss on everyday life. Through our independent living services, our specialists work with Canadians who are blind or partially sighted one-on-one or in a group setting, helping them build the skills to live independently. They will help develop techniques for identifying money, using the phone, pouring a cup of coffee, labelling medications and organizing household items. They will also teach important travel techniques to regain independence, like the sighted guide technique, how to walk with a white cane and how to ride public transit with confidence. For our working-age clients, our career and employment services can provide the information and resources needed to build job skills and achieve a satisfying career. For families, CNIB is there at every stage as an essential resource. Our child and family services offer children support like braille preparation, tactile learning sessions and peer programs. We provide parents with a variety of resources including educational materials, peer groups, and workshops on raising a child who is blind or partially sighted. Through Shop CNIB we also offer access to a range of innovative consumer products and technology that can make life with vision loss easier The CNIB Library, houses Canada’s largest collection of materials in alternative formats like braille and audio. Users can download books and daily newspapers at the click of a button through our digital collection, or enjoy classic movies with our narrated video collection. In addition to our community-based services, we also work hand-in-hand with Canadians who are blind or partially sighted to advocate for a barrier-free society, and we strive to eliminate avoidable sight loss with world-class research and by promoting the importance of vision health through public education. Since our founding in 1918, CNIB has grown to become the primary resource for Canadians who are blind or partially sighted, with offices in communities across the country. We’re proud to help thousands of Canadians see beyond vision loss every single day.