Meet the Visionaries

Every person living with low vision encounters unique experiences and challenges.

The Visionaries are an inspiring group of people living, or supporting loved ones, with low vision.

Here we share their unique realities of life with low vision. 

Roche and Retina International are proud to present these true stories

Retina International logo
Roche logo

Get to know our Visionaries and their stories

Group-363-v2.png

Brigitte

Living life to the fullest

Evella-desktop@2x.png

Evella

Healthcare teams

evella-and-jamie-desktop@2x.png

Evella and Jamie

Daily independence

jess-desktop@2x.png

Emotional wellbeing

Group365@2x.png

Jill

Family support

Group369@2x.png

Joe and Jill

Travel and independence

Group370@2x.png

Sandy

Hobbies and community

Group371@2x.png

Tom and Sandy

Day by day

Group-363-v2.png

Brigitte

Living life to the fullest

Group 569@2x.png

Caryl

Peer support

Evella-desktop@2x.png

Evella

Healthcare teams

evella-and-jamie-desktop@2x.png

Evella and Jamie

Daily independence

jess-desktop@2x.png

Emotional wellbeing

Group365@2x.png

Jill

Family support

Group369@2x.png

Joe and Jill

Travel and independence

Group370@2x.png

Sandy

Hobbies and community

Group371@2x.png

Tom and Sandy

Day by day

Brigitte

 

This is Brigitte’s story. After the shock of her dry age-related macular degeneration (AMD) diagnosis, which progressed to wet AMD, technology has played an important role in keeping up with the everyday tasks.

Brigitte has found new ways to continue her hobbies and is knitting thanks to finding the perfect lighting, needles and wool which suit her needs.  

“Allow yourself to enjoy life… I see the glass half-full, not half-empty.”

Back to the top

brigitte.png

caryl-video-placeholder.png

Caryl

 

This is Caryl’s story. Her personality shines in whatever she does; taking control of the challenges dry AMD presents.

Although she had to stop working and lost some of her independence, through adaptations and the help of peer support, Caryl can still do many things that she loves. Being able to bake again brings her constant joy.

“I’m happy with what I’ve got, and if it does progress, then I will adapt because that is what it’s all about. It’s adapting or transforming your life and making it a reflection of your own personality.”

Back to the top

evella-video-placeholder.png

Evella

 

This is Evella’s story. Evella took a big hit to her independence when she was diagnosed with diabetes-related macular edema (DME) and her leg was amputated due to diabetes-related complications.

Despite the circumstances, the support Evella received from her daughter, Jamie, and playing an active role in her healthcare decision making meant she could carry on enjoying life.

“I don’t know that I hold a lot of hope for something better than this. I think I focus mostly on enjoying every minute of this because I don’t know how long it’s going to last.”

Back to the top

Evella and Jamie

 

This is Evella and Jamie’s story. As well as her mum, Evella is Jamie’s best friend, and their close relationship has helped them both through the challenges of life, including when Evella was diagnosed with DME.

Jamie takes an active role in Evella’s healthcare, making sure she can get to her appointments, helping to digest any information shared in clinic and always there to support Evella after treatment.

“One of the things that has been really rewarding, after treatment, is watching her be able to be more independent again, watching her not be as scared to venture off and do things on her own again.”

Back to the top

evella-and-jamie-video-placeholder.png

Jess

 

This is Jess’* story. She received an unexpected diagnosis of diabetes-related retinopathy and DME shortly after graduating from university.

In the beginning, Jess found treatment challenging and received little support. She became depressed, but a psychiatrist helped her feel more positive about the future.

“It’s difficult, but I’m determined to live my life as an ordinary person, to work, and have my own independence.”

* This is a real story of a young women living with DME in China. To respect her wish to remain anonymous, we are using the pseudonym of Jess and a voiceover actor in this podcast.

 

Back to the top

 

In-Focus Podcast
0 0
Previous chapter
Next chapter
  1. Introduction to the podcast and guests
    0
  2. The impact of a DME diagnosis
    151
  3. Screening and early detection
    471
  4. Management journey and stigma: language matters
    867
  5. COVID-19 and living with diabetes
    1380
  6. The importance of support
    1727
  7. Hopes for the future
    1917
  8. Summary of discussions and closing
    2140
M-XX-00008501

jill.png

Jill

 

This is Jill’s story. After leaving her career as a nurse, following her AMD diagnosis, Jill has found talking therapy helped her. 

Jill’s family team together to help with her low vision - including her grandchildren, who race to help pick up anything she might have dropped.

“My grandsons are all involved in sports… whether I can see them or not, I’m there… that’s important for me, to be there with them. I won’t give that up.”

Back to the top

Joe and Jill

 

This is Joe and Jill’s story. They spend their time travelling as much as they can and enjoying precious family time.  

After 40 years of marriage, they support each other every day and go to each other’s medical appointments as, Jill says, “four ears are better than two.” 

“It’s so important to gain patience in allowing the person with AMD to still be independent.”

Back to the top

joe-jill.png

sandy.png

Sandy

 

This is Sandy’s story. Sandy is always finding ways to do the things in life most important to her, while living with wet AMD. 

Going online helped her be more informed about her diagnosis and find support groups sharing tips on life with low vision – including how to put your make up on!

“When people are first diagnosed with wet age-related macular degeneration, it can be traumatic for some, I’m sure. I’ve been extremely active during all of the years [with AMD]… Attitude probably is one of your most important assets when you have any disease.”

In this film, Sandy mentions ‘shots’, which is an informal term in some countries for injections.

Back to the top

Tom and Sandy

 

This is Tom and Sandy’s story. Together 64 years since high school, they have made certain changes in their lives, playing to their individual strengths to support each other’s health, including adapting to Sandy’s needs while living with wet AMD. All to keep doing the things they love, together. 

“You take one day at a time… It’s like everything, you have good days and bad days.”

Back to the top

the-first-signs-2.png

Glossary – defining the terms

Age-related Macular Degeneration (AMD) can happen when aging causes damage to the macula, responsible for central vision. AMD progresses slowly over time, though the speed can change according to which type of AMD you have.

Dry AMD refers to the thinning of the macular as you age, affecting the cells responsible for seeing in colour and can result in challenges seeing in low lighting.

Wet AMD refers to late-stage AMD and occurs when new blood vessels leak fluid or blood at the back of the eye, causing damage to the macular. This can mean that straight lines may appear to look wavy in central vision, colours less bright and hallucinations.

Healthcare professionals refer to the condition AMD as `neovascular', 'wet' or 'dry' depending on the type and stage of AMD, which are all correct medical terms. 'Wet' and 'dry' are widely recognised by the patient community so are used across Visionaries materials. In some instances, patients may use more medically recognised terminology like 'neovascular'.

Diabetes-related macular edema (DME) is a common cause of low vision in people living with diabetes and results in a condition similar to wet AMD, affecting central vision. DME can severely impact a person's quality of life by limiting the ability to perform daily tasks, increase loneliness and affect mental health. It is the leading cause of low vision among working-age people in the Western world.

Healthcare professionals refer to diabetes-related low vision conditions as `diabetic macular edema’ and `diabetic retinopathy’, which are the correct medical terms for these separate conditions. The patient community prefers to not use the term `diabetic’ for several reasons, so we might refer to the conditions as `diabetes-related’. Please note that we are describing the same conditions.

Coming soon…

…stay tuned for more realities, experiences and tips from our community of Visionaries

Discover more

Group61@2x.png
Group57@2x.png

Meet Joe

Supporting his wife of over 40 years to stay independent despite low vision