by LETIZIA GABAGLIO
Imagine the sound emitted by a guitar cut in half. How could it be? Out of tune, weak, incomplete, or even no sound at all. It is the condition experienced by people with rheumatoid arthritis who are not treated adequately: those who are unable to counteract the pain, stiffness and exhaustion must be satisfied with living in half, with limiting their daily activities, as if slowed down by a disease that makes gestures like unscrewing a coffee pot or tying the shoes of mountains too high to climb. A burden to carry for those who suffer from it, which also weighs on the wallet of his family and the community, as demonstrated by a research conducted by the Catholic University of the Sacred Heart. Expenses for additional medical visits, medicines, checkups; costs for the healthcare system for hospitalizations and for society in terms of working days that those who are ill and their families lose due to the disease.
A long shopping list that would be eliminated if remission from rheumatoid arthritis were achieved: that is, if the pathology were “frozen” at the stage it is in, without progressing. Thus one could find the other part of the guitar, and go back to playing fully. To help those patients who have not yet achieved remission, which a study estimates to be half of the patient population, the awareness campaign “Speak Louder About Your Rheumatoid Arthritis” is born, promoted by AbbVie: a site full of information and advice of experts, along with disease state assessment tools. To give patients greater awareness of what they can achieve.
What is rheumatoid arthritis
The system that defends us can become a weapon aimed at us. It happens in autoimmune diseases, such as rheumatoid arthritis, in which a mechanism is triggered that leads the immune cells to attack some building blocks of our body, such as joint collagen. The result is a state of chronic inflammation that mainly affects the joints which become swollen, painful, swollen and deformed over time: the small joints of the hands and feet are usually involved, but all joints in the body can be affected . If rheumatoid arthritis is not treated effectively it can lead to bone erosion and can also cause systemic diseases such as pulmonary fibrosis. Stopping the inflammatory process and the progression of the disease is possible thanks to drugs that act on the immune system by neutralizing inflammatory molecules.
It is a pathology that can cause intense pain in the joints, swelling, stiffness and loss of functionality, causing disabling consequences. It usually affects the hands, feet and wrists and a general symptom is fatigue. Patients may have sudden flare-ups, or periods when symptoms get worse, that are difficult to predict. Clinical remission is a goal of primary importance for the rheumatologist and, especially today that we have expanded the therapeutic armamentarium, achieving remission is possible.
Gian Domenico Sebastiani, President of the Italian Society of Rheumatology (SIR)
Remission saves money
It is precisely the availability of this type of drug that prompted researchers at the Catholic University of the Sacred Heart to estimate the economic value of rheumatoid arthritis remission. Especially in the most severe forms of the pathology, if remission is not achieved, patients can lose more than 5 working days a month, about 72 hours a month, 892 a year therefore, which correspond to an economic loss of more than 12 thousand euros a year; the caregiver instead gets to lose about 25 hours a month, 300 a year for an economic loss of about 450 euros a year.
A life to be lived fully
Being able to go to work, but also go out for dinner, for a walk. Return to having a quality of life similar to those who do not have the disease. To do this, in addition to the correct therapy, people with rheumatoid arthritis must try to eat correctly, to do moderate physical activity, not to underestimate the quality and quantity of sleep, to regain possession of their sex life. As? How much? Patients should discuss this with their doctor
Benefit
Improved cardiovascular health
Exercise type
cycling – walking – swimming – dancing
Intensity to get the maximum benefit
30 – 60 minutes per session
3 – 5 days a week
Gradually increase duration and intensity
Benefit
Increased muscle mass and strength
Exercise type
Bodyweight exercises with weights – with equipment – with elastic band
Intensity to get the maximum benefit
8 – 10 exercises / 8 – 12 exercise repetitions
2 – 3 days a week
Gradually increase intensity
Benefit
Increased range of motion and flexibility and boost joint health
Exercise type
Stretching – tai chi – yoga and pilates
Intensity to get the maximum benefit
10 – 15 minutes per session
2 days a week
Benefit
Improved balance
Exercise type
Single leg exercise – with stability ball – stretching
Intensity to get the maximum benefit
Regularly
Dialogue with the doctor
In fact, speaking louder about rheumatoid arthritis begins in the doctor’s office. Two useful tools for doing this are the survey and the form “tell your AR” on the campaign website: a simple and immediate way to focus on the state of the disease, the needs and expectations of everyone. A good starting point to open a dialogue with the doctor with the possible goal of achieving remission.
Guide to getting better
Did you know that proper nutrition can help control the inflammation that causes rheumatoid arthritis? And that physical activity can help you regain physical function and relieve pain? Or again, that your sex life is affected by your illness and that you can do something about it? And finally, that insomnia negatively affects therapy? Quality of life is a puzzle to be built piece by piece. Here are some expert advice on treating rheumatoid arthritis
Research has given me new life
With 58 years of pathology behind her, Antonella Celano, president of the Apmarr patient association, can tell many things. But the first one she wants to emphasize is that if she managed to go into remission, then the goal is really achievable. “I bear the signs of the disease on my body because I had a late diagnosis and therefore I began treatment after 10 years of suffering, but today my life is normal: I travel, I go to concerts, I go out. Even those with rheumatoid arthritis can aspire to have a full life,” she tells us. Antonella has the first symptoms when she is very young, at 4 years old, but it is only at 14 that she gets a diagnosis and begins to be treated. “I got up in the morning and I felt bad, my fingers were closed into fists and it took even half an hour to get them back to normal, to leave the house I had to count on two hours of preparations. But then once out I got tired easily and had to go home. The pain came and went so as soon as I got better I tried to do something, but I was in a lot of pain,” she says. It is difficult to make the suffering of these patients understood, but Antonella suggests an image: rheumatoid arthritis is a disease that strikes on average in the prime of working age – between the ages of 30 and 50, women more than men – and reduces to not being able to make coffee anymore. In the beginning the drugs were less effective, but today there are innovative molecules. “If I could, I would go around with a sign saying ‘long live scientific research’: finally there are drugs that are easy to manage and that put the disease into remission”, she concludes.