Living with AMD: two stories in search of light
AMD is an increasingly prevalent and highly incapacitating disease. Although it does not affect any vital organ, it has important consequences on people’s autonomy and on their relationships as it affects central vision which prevents them from driving, reading and even seeing the faces of their loved ones. In the Western world, it is the main cause of blindness in the over-70s.
Milagros García Bonafe has age-related macular degeneration (AMD) in its atrophic type, a disease that currently has no cure. To live a normal life, she depends, in part, on her family and her ability to adapt to the situation. "There comes a time when you stop feeling embarrassed at asking when you can’t see and you get used to the fact that there are things that you can’t do anymore", she states resolutely. "Although my peripheral vision is still quite good, I try to lead a life as normal as possible, despite the limitations".
Milagros was first diagnosed with the disease at the age of 53. Since then, she has undergone medical examinations every six months. "I do all the checks that are necessary to monitor progression and I always arrive with the hope that one day the doctor will tell me: 'We have found the cure and we will be able to solve it'", she says hopefully. Milagros has already participated in two clinical trials and has confidence in the work of the researchers.
"Research is a race against the clock", says Dr Jordi Monés, MD, PhD and Director of the Institut de la Màcula. "This in an exciting time, with important advances, but there is still much to be done".
Ten years ago, AMD was a devastating disease. Currently, research has been able to turn the situation around, thanks to the new techniques and drugs discovered that help to halt the progression of the disease. More recently, cell therapy has positioned itself as a therapeutic reality. "With the necessary resources, we think that in the medium term we will be able to obtain an effective treatment for atrophic AMD. When at global level, all the agents involved are conducting research and sharing their knowledge, the closer we are as a society to achieving significant advances", explains Jordi Monés, who is also the founder of the Barcelona Macula Foundation, a non-profit organisation whose main focus is to investigate macular and retinal degenerations.
The case of someone else affected by the disease, Pilar Padró, is very different from Milagros’s. Pilar also suffers from AMD but she has the exudative type, which can be treated. "When they told me I had a degenerative disease, I felt very upset and it was hard to accept. But once I accepted that I had the disease, I felt relieved to know that it could be controlled", she explains. The treatment to which she is referring is performed using anti-angiogenic drugs that are applied by intraocular injections directly into the vitreous cavity. "The injection is not painful because it takes only a few seconds but a prick in your eye makes you very nervous".
For Dr Jordi Monés, these nerves are understandable, even if the process involves the application of topical anaesthesia and is quick and painless. "I talk a lot to patients because I think it’s important and I always try to make them relax. I tell them: 'Trust me and try not to picture the scene'. I also explain that our team has great experience and that they are in good hands".
Pilar views this trust as essential, as is adhering to medical visits and never forgetting that AMD is a chronic disease. "It’s not hard for me to come because I know that, thanks to the treatment, I have maintained the same level of vision that I had when I first arrived. This motivates me to keep going".
Pilar visited the Institut de la Màcula for the first time in 2012 after showing the initial symptoms of the disease. “We treat it every two months to keep her AMD at bay. We know that effective treatment is able to halt the process in three out of four cases", Dr Marc Biarnés says.
This proactivity is especially important as the recommended number of intraocular injections is a minimum of 7 during the first year, while in many countries the average is 6 injections in 2 years. This under-medication entails a huge risk in terms of vision loss.
After the first 12 months, if the treatment works, the injections can be more spread out. The Institut de la Màcula always delivers personalised, early, proactive and extended treatment over time. It is not worth providing our patients with vision for a short period of time. Our ambition is long-term, hence the importance of not stopping treatment.