It looks like you are using an older version of Internet Explorer which is not supported. We advise that you update your browser to the latest version of Microsoft Edge, or consider using other browsers such as Chrome, Firefox or Safari.

Wet macular degeneration can alter daily life and how you interact with family, friends, colleagues and more. Often, patients find it helpful to hear from others living with the condition to learn new ways to manage the practical and emotional impact of wet macular degeneration. Read on to learn how one patient managed a dry macular degeneration diagnosis, followed by progression to wet macular degeneration – all while staying positive and working to continue living the life she enjoyed before.

Receiving a diagnosis

At first glance, it doesn’t seem as if Emma* has gone through a lot in life. Her disposition is so sunny, and she seems so friendly and helpful that it’s hard to believe she has many worries.

But Emma, who grew up with her three siblings – one brother and two sisters – in the 1960s, has experienced some misfortunes in her life.

Around the turn of the millennium, she was involved in a motorcycle accident that left her seriously injured. A short time later, she was diagnosed with breast cancer and underwent a very difficult period of chemotherapy.

Then in 2012, Emma found out that she was suffering from the dry form of macular degeneration, a common eye disorder in which the center of the field of vision gradually deteriorates, which patients experience as blurred vision.1 Her condition worsened over time and she subsequently developed wet macular degeneration, in which the photoreceptors in the area around the yellow spot known as the macula, begin to die off at an even faster rate.2

Woman wearing glasses standing in office with arms crossed and smiling
Stock photo. Posed by model.


“At first, it was a shock when I found out that I had an eye disease,” recalls Emma, thinking back to the time she first learned in 2012 that she was suffering from the dry form of age-related macular degeneration. “Initially, it was almost worse than when I found out about my cancer diagnosis. I was scared because I didn’t know what to expect, and because I was afraid that the disease might quickly lead to blindness. I simply wasn’t prepared for that.”

“But it turned out to be a blessing in disguise,” she says. Her disease was detected early. Because of the cheekbone fracture she had suffered in her motorcycle accident, her doctor examined her eyes regularly as there was a risk that her retina could detach itself as a result of her facial injury.

The early diagnosis was important because it allowed her to gain confidence and adapt her lifestyle.

Although Emma learned that there are few medical resources for treating dry macular degeneration, specialists were able to reassure her that she would not suffer total blindness. While macular degeneration can lead to a total loss of the central field of vision, making it impossible to read, the external field of vision remains intact, so patients can continue to get around at home and outdoors.1

Early diagnosis allows doctors to monitor and manage the condition in case it worsens. Especially for older patients, doctors recommend regular eye check-ups. If objects in the field of vision are blurry or distorted or if the patient’s ability to focus declines, then a visit to the doctor is needed. This is especially true for risk groups such as smokers, people with fair skin or those with a family history.1

Under professional medical supervision, Emma adapted her daily routine, wore sunglasses regularly, and generally maintained a healthy lifestyle. She also had regular eye examinations, as macular degeneration can change suddenly.

Treatment for wet macular degeneration

Over time, Emma noticed that her vision was worsening and that she was starting to see “lightning.” Her doctor became concerned and ordered another examination at a specialized clinic, where it was determined that she had developed wet macular degeneration. This development occurs in about 10 to 15 percent of all patients with the dry form of the disease.2 When this occurs, new, porous blood vessels form in the choroid below and in the retina, which can lead to bleeding, swelling and, in later stages, scarring.

The progression of wet macular degeneration is much faster than the dry form. Unlike the dry form, the wet form can be treated medically, preventing the disease from progressing. As part of the treatment, patients receive an injection in their eye every few weeks.2

“Thanks to the early diagnosis and regular medical check-ups, I received care quickly,” says Emma. “This was important because it has allowed me to continue living my life as before. While I am limited in some things, I am independent and know how to manage my daily life.”

Adapting to life with wet macular degeneration

Nevertheless, the daily challenges remain considerable: In addition to regular doctor visits, which keep her from work now and then, Emma makes sure not to strain her eyes too much. When she drives in her car, she wears tailor-made sunglasses, especially in summer. At work, she uses computer reading glasses instead of her normal glasses. Emma also uses a magnifying glass to read small writing better.

eye glasses over plain background


As a customer advisor at the reception desk of an international camera manufacturer, she is used to contact with people. But neither her customers nor most of her colleagues are aware of her condition.

“Sometimes I hear stupid things like ‘She’s really blind’ when, for example, I use a magnifying glass to read the words and markings on a camera lens,” she says. “It’s not always easy to deal with this sort of thing and it unsettles me a bit sometimes.”

For this reason, she tries to avoid certain situations whenever possible. For example, she avoids strong sources of light. She and her manager, whom she informed about her condition and who has shown great understanding for her needs, have agreed to open the skylight above the reception desk where she works only occasionally, as the artificial light blinds her and hurts her eyes.

Driving at night during rain or bad weather is also difficult. Emma doesn’t take any unnecessary risks and occasionally skips a summer party with her work colleagues. She is also currently looking for an apartment close to work.

Building a strong support network

Despite all of the difficulties, Emma has become accustomed to her new life situation, even though the loss of her vision upsets her, and she is still afraid that her illness could worsen and that she might lose the center of her field of vision. But she’s doing everything she can to make sure this doesn’t happen.

She enjoys her work immensely and being around customers brings her great joy. When at work during the summer in 2019, none of the many customers there were aware of Emma’s visual impairment. Displaying a significant amount of energy, she helped customers in the shop, responded to emails and telephone calls, and checked each individual camera lens with great care.                                                                                                                         

In addition, she also receives substantial support in her personal life. She is delighted about the assistance she has received from some patient advocacy organizations and knows that nowadays her condition can be treated with medical supervision and the help of innovative medicines. She also derives hope from the research advances in the area of macular degeneration and the new treatments that are being tested.

“Speaking with doctors as well as others affected by the disease gives me certainty and confidence and, not least, the will to continue doing what I can in life and not to give up.”

 

*Full name known to the editor



-----------------

References:

  1. National Eye Institute. Facts About Age-Related Macular Degeneration. Available at: https://nei.nih.gov/eyedata/amd. Accessed July 2020.
  2. Gehrs KM, Anderson DH, Johnson LV, and Hageman GS. Age-related macular degeneration—emerging pathogenetic and therapeutic concepts. Ann Med. 2006;38:450-471.​
Curated Tags