Early diagnosis is most important in AMD

There are nearly 190 million AMD patients worldwide. In Poland, according to the Retina AMD Association of Poland, there may be as many as 140,000 people with the exudative form of this progressive, multidimensional disabling disease. It is estimated that there will be up to 14 thousand new patients each year. Among the risk factors cited are age (over 50), race (white), gender (female), family history of AMD, and unhealthy lifestyles associated with smoking, physical inactivity or hypertension. The previous report was prepared in 2015. As the association's president, Malgorzata Pacholec, points out, a lot has changed in patient care over the past eight years.

- Since 2016, patients have been treated in the drug program. It's a fantastic program, which is the gold standard for treating patients with exudative AMD. So we have a very good standard of treatment. However, at the moment it treats at most 30 percent of the population with exudative AMD. And what about the rest? That rest goes blind," says Malgorzata Pacholec.

It turns out that Poles are starting the fight for their eyesight far too late. This is due to unequal access to ophthalmic care. One has to wait in line for a consultation, in various places in the country, for up to six months. The problem is noticeable not only in small towns, but also in large cities. Meanwhile, early diagnosis is a key issue, primarily because the available treatment is not causal. This means that the disease cannot be cured, only its progression stopped. Diagnosis also paves the way for comprehensive care, which should come down to more than just the administration of a drug.

- It's a whole approach that includes supportive treatment, which includes rehabilitation or helping an elderly patient get to treatment. We are pushing for better access to ophthalmologists, for regular examinations, screening tests, the use of modern techniques such as telemedicine or artificial intelligence. We are also pushing for the implementation of new drugs. There is a treatment regimen, because patients have to appear every two months on specific days for an injection, or injection into the eyeball. They often have long distances to travel. Patients are looking forward to treatment that is less consuming and less rigorous," adds Malgorzata Pacholec. The issue is access to new therapies, extending the time between injections up to 15 weeks.

Adequate, coordinated care, communication and support are also important because of the nature of the condition. As patients say, AMD is not a disease that blinds. Peripheral vision remains. The disease is primarily associated with decreased visual acuity. Added to this is distortion and blurring of the image. Patients have difficulty driving, reading and even recognizing faces. Progressive vision loss is not only a reduction in quality of life, but also a gradual dependence on caregivers. This results in feelings of anxiety, isolation and loneliness.

- When it comes to supporting such a patient, I think the most important thing will be the doctor, because he is the one who gives the cure and the hope to continue to see the world. As for the patient's loved ones, it is important to remember that they experience the disease in a similar way, that they also have unpleasant emotions, because they have fears that this close person will cease to be independent and functional, will require assistance. And people often do not know how to behave and emotionally support such a person. Meanwhile, it is necessary to lend a hand and say that we will get through this together," stresses psychologist Dr. Katarzyna Korpolewska.

The Foundation's latest report: "nAMD - the patient pathway from diagnosis to treatment".

On the initiative of Retina AMD Poland and the Institute for Patients' Rights and Health Education, the "Keep Your Sight" campaign was launched in March this year. The idea behind the campaign is to provide broad education about retinal diseases such as age-related macular degeneration (AMD) and diabetic macular edema (DME), which can cause vision loss. Campaign website:

www.zachowajwzrok.pl makes it possible to learn about retinal diseases and the world as seen through the eyes of patients, it also shows the patient's path thanks to the map of ophthalmology centers in Poland provided.