When the world turns off: daily life of patients with visual impairment | What is important – BAYER

When vision deteriorates, it’s time to learn new skills or change habits to get on with your daily life. Place embossed stickers to recognize the buttons on your appliances, use apps that read mobile messages out loud, swap books for audiobooks or TV for podcasts… “It’s about autonomy, about living a normal life within limitations. I can’t distinguish people’s features, but I have very good hearing; I can’t paint with watercolors, but I paint silk on large frames,” explains Luz Galvan, 75, who suffers from age-related macular degeneration (AMD).

Galván is one of the million Spaniards who suffer from visual impairment. The reasons vary, but there are two that carry some weight: age and diabetes. The former can lead to AMD; the second is diabetic macular edema (DME). These two pathologies are the main causes of blindness in Spain, and although there are treatments that can slow their progression in many cases, everything requires early detection and early treatment.

Acción Visión España was born out of the need to unite the efforts of groups and associations involved in the care of people with visual impairments. Their work not only focuses on affected people, but also extends to families, healthcare workers and anyone else who needs support and information. “Our goal is to form a common front to demonstrate the needs of this group that remain unmet.”

“The sooner we are diagnosed, the sooner we start treating ourselves, the better we will respond to treatment,” explains Andrés Mayor, president of Acción Visión España, an organization founded in 2012 that brings together various associations dedicated to caring for people with pathologies vision. “If we start treatment immediately after the disease is detected, we can preserve quality of life and vision for much longer. “That’s what we want: to preserve the greatest vision for as long as possible.”

From the organization he heads, Major sees the reality of patients’ daily lives, their difficulties and problems. The main one is “to preserve vision and avoid blindness.” To do this, it is extremely important to know both individual risk factors and warning signs.

At 75 years old and legally blind, he notes that “the most important thing in a person is adaptation and finding points of light among problems.” He founded the association to help people with low vision and take initiatives that help them and increase their social significance. Their goal is to make Tres Cantos an inclusive city.

Luz Galvan was 50 years old when she suddenly began to see that everything around her was distorted, that “stripes were moving.” It was almost day to day, but in fact the source of the problem came from afar, from early childhood: “When I was three years old, I was diagnosed with severe myopia; Then the ophthalmologist told my family that I would not be able to study or lead a normal life, but my mother did not give up, she turned to another specialist, and they told me that I could do whatever I wanted. In fact, I graduated.”

His life was just like everyone else’s until that day in 1997 when the world started going wrong. At the hospital they explained to him that he had AMD and that in his case it was due not so much to age as to severe myopia diagnosed in childhood. AMD is a condition that destroys both central and acute vision, and in its wet form, which Luz Galvan suffers from, causes abnormal growth of blood vessels.

MACULAR DEGENERATION AGE RELATED (AMD)

• It is a degenerative eye disease that affects the macula (the central area of ​​the retina) and slowly destroys both retinas. central vision (i) How acute vision (ii).
• This is the first reason legal blindness (iii) in people over 50 years of age in developed countries.
• There are 130,000 cases diagnosed in Spain, although it is estimated to affect more than 700,000 people.

(i) The ability of the eye to perceive small spatial differences, textures or contours, (ii) The ability of the eye to perceive and distinguish two objects separated by a certain angle, (iii) Visual acuity less than or equal to 10%

Initial symptoms

• Straight lines appear wavy or crooked, and a spot is felt in the center of the eye, making it difficult, for example, to read.

Progress

• It progresses quickly and, if left untreated, can lead to blindness.

Guys

atrophic AMD or dry

exudative AMD or wet

• It is a progressive macular degeneration characterized by thinning and loss of retinal cells without accumulation of fluid or blood.
• Care: There are currently no approved pharmacological treatment options for atrophic AMD.

• It involves abnormal growth of blood vessels under the macula, causing fluid or blood to leak, which damages the retina and leads to faster vision loss.
• Care: Intravitreal injections of anti-FEVG drugs, laser photocoagulation, photodynamic therapy, surgery.

Sources: Spanish Society of the Retina and Vitreous, Retina+, Macula Retina Association, Report on Blindness in Spain.

He then began his journey with the treatments of the time, mainly “laser points that cauterized the vessels, but the site of their application was no longer visible.” Perhaps if this happened today, the disease could be better controlled and prevent further progression. But this could not be: “In 2003, I could not continue to work, I stopped driving, and everything at home became more complicated: from turning on the ceramic hob to turning on the washing machine with a magnifying glass.”

Diagnosed as legally blind, she helped set up an association for the visually impaired and offers a message of hope to patients in this situation: “There are now very good injections that stop bleeding from blood vessels. In my case, they were useless because they were already cauterized. “I’m late.”

It’s about arriving on time, and to do this Andres Mayor insists on paying attention to the initial symptoms of AMD: crooked lines and loss of central vision. “In the case of diabetic macular edema, it is even more important that treatment begins immediately. People with diabetes should monitor their vision closely, get periodic exams, and don’t hesitate to go to the emergency room if they suddenly notice blurred vision or floaters.”

The illness forced him to change the direction of his life, to which he is still adapting. He admits that he needed “help to move forward; I received help from private organizations such as ONCE or Es Retina, as well as psychologists who specialize in people who have lost their sight.”

“One day when I woke up, the world had disappeared. “Everything was empty.” This is how 57-year-old Juani Rodriguez Cortez remembers the moment of the blackout. She has lived with diabetes all her life; she was diagnosed when she was 21 years old. Around 2016, he began having problems with his vision. “On first examination nothing seemed strange, but I was eventually referred to a retinopathy clinic and after several tests I was diagnosed with macular edema.”

Treatment with intravitreal injections allowed her to maintain her vision for several years. “I could continue to lead a normal life, but I was warned that there might come a point when the retina would no longer hold on, and that’s exactly what happened to me. My swelling, which was dry at first, got worse and I started bleeding in both eyes.” After several operations he was able to regain some vision, “but I had to quit my job, I was disabled and declared legally blind.”

One of the first pieces of advice they gave him was to make an appointment with a psychiatrist. “It’s very difficult to adapt. I learned tricks to continue to be autonomous, to get dressed, to microwave food, to use a cane. I changed the direction of my life, moved to live in a village in Lugo and feel quite good.”

The cases of Juani Rodriguez and Luz Galvan are examples of what should be avoided: vision loss. Because “it is important to remember that there are now treatments available that can be very effective in many cases,” emphasizes Andrés Mayor. In addition, he continues, “the new set of options helps to significantly improve the quality of life.”

At issue is the possibility that the intravitreal injections that are the mainstay of treatment do not need to be administered every month, but rather that their dosage schedule expands over time. “Patients depend on being transported to and from hospital, their families have to ask for days off for this… And often there are older people, especially in rural areas, who don’t want to be a burden, who think they can get it and what not to go going on a date is fine. But this is a huge mistake. That’s why it’s important to reduce the number of hospital visits.”

Luz Galván ends with advice that is “fundamental for anyone starting this journey: I would tell them that it is very important not to isolate yourself, to communicate with other people who have similar problems: you can always learn something from them.” and, moreover, it gives strength and helps you see that, despite these pathologies, you can move forward.”