Team:UFMG Brazil/Integrated Human Practices
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Stepping into Rheumatoid Arthritis World
(1) Interview with patients
The prevalence of Rheumatoid Arthritis is high, reaching about 1% of the world population, causing functional limitations that can reduce substantially the patients' quality of life. Many studies have been investigating these limitations and the psychological impact of the disease, but the team wanted to hear out the difficulties of patients from our community, to better understand their daily challenges. Besides, since they are the most interested in our project, we wanted to know how well they accepted our project, which involves a feared parasite, the protozoan Leishmania. We interviewed three patients: Maria Deusta, 43 years old, who has been suffering from RA for 12 years; Dalva Diniz, 66 years old, who lives with RA for 20 years; and Paulo César, 63 years old, who has had RA for 30 years. They told us they feel a lot of pain in the joints, and it is very difficult to perform simple daily tasks, such as bending down to grab something, to climb stairs and to clean things. These patients would be willing to submit to a treatment with Leishmania, if it was proven to be safe.
(2) Interview with a RA Specialist
To better understand the disease from a professional point of view, we also talked to a specialized Rheumatologist, Dr. Maria Vitória Quintero, who told us about RA treatment, patients' complaints and discussed about our project with us. According to Dr. Quintero, patients must start the treatment as soon as possible and should not leave it unfinished. They should also keep regular physical activities and a healthy psychologic state. She also believes that LeishMania could be a great option of treatment to complex diseases such as RA.
Interview with Dr. Maria Vitória Quintero 1) What is Rheumatoid Arthritis? What are the main symptoms and how is the disease evolution? “Rheumatoid arthritis is a chronic inflammatory disease with an immunological origin. The first signs and symptoms appear insidiously, leading to pain (arthralgia), presenting or not inflammatory signs (arthritis) and affecting small or large articulations. The symptoms are normally symmetrical and have a clear preference for small articulations of hands. This disease can also present systemic signs and symptoms like fever, poor general condition, prostration and weight loss. The morning stiffness (difficulty to move articulations after a rest period) reflects this inflammatory process. There may be the involvement of extra articular organs such as lungs and skin (vasculitis). If untreated, the disease evolution can be disastrous, with destruction of the joint, which will lead to deformity and motion limitation, causing physical disability.” 2) There are risk factors such as age, gender and other conditions that may predispose to the onset of RA? “Although rheumatoid arthritis has a clear preference for women aged 40-50 years, it can occur in both sexes, at any age. It has been proved that the use of tobacco is associated with a higher risk of developing the disease.” 3) How is RA diagnosed? When a specialist should be consulted? “Symmetric polyarthritis is the classical presentation of the disease. The diagnosis is through clinical examination and it can be confirmed by laboratory tests. The positive rheumatoid factor and anti-CCP tests indicate the presence of RA but if the result is negative, it does not exclude the diagnosis of the disease. Imaging tests may suggest or confirm the diagnosis such as X-ray with typical deformities of RA, resonance and ultrasound with presence of synovitis.” 4) What are the most affected joints in patients with RA? “Any articulation can be affected by RA. Most of the times the disease is polyarticular, with signs of synovitis in small and large articulations. The most common affected articulations are those from hands - metacarpophalangeal, proximal interphalangeal and wrist.” 5) What is the recommended treatment? “The goal of treatment is to control the inflammatory activity of the disease and lead to remission of signs and symptoms. The earlier the treatment begins, the better are the responses. There is a therapeutic window in the first two years of signs and symptoms in which the disease responds better. The use of hormonal and/or non-hormonal antiinflammatories are helpful, but the medication do not lead to remission. Immunomodulators such as hydroxychloroquine, methotrexate, leflunomide, sulfasalazine, cyclosporine, and the biological line drugs are also important, depending on the severity of the condition presented by each patient.” 6) What are the main complaints of patients? “Joint pain with swelling, difficulty in movimentation associated with fatigue, discouragement and poor general condition.” 7) How can patients maintain their quality of life? “Patients must start the treatment as soon as possible and should stick to it. The practice of physical activity whenever possible is very important, and can be adapted to each person’s capacity of. Mental health is as important as physical health. Working the good mood, and knowing how to deal with the difficulties that the disease imposes are also important.” 8) In your opinion, what are the main challenges that AR offers to doctors and patients, nowadays? “Rheumatoid arthritis can be a severe disease with a considerable risk of deformities and disabilities. Early diagnosis and treatment is the key to obtain a good result. The main challenges are the regularity of treatment by the patients, the regular use of medications and the frequent re-evaluation to better recognize therapeutic failures and prescribe another treatment if necessary. Today we have a lot of treatment options with better responses than those we had 10 years ago. Although we still do not have the cure for RA, we can reach the remission of the disease, but its reactivation even after a controlled period is not uncommon." 9) What are your opinion, comments and suggestions about our project? “I think the project could be a great option of treatment to a such complex disease like RA”
(3) Partnership with NGO
Besides the physical disabilities caused by the RA, the disease also commits a lot the psychological health of the patients. As our project is focused on the treatment of the RA, we considered important also learn this other side, to fully understand the impact of a good treatment in patients lives. In this regard, our team had the collaboration of Priscila Torres, who, after diagnosed with RA, decided to change the common perspectives about the disease; she has created a blog - named "Artrite Reumatoide: dor compartilhada é dor diminuída" (“Rheumatoid Arthritis: shared pain is lessened pain”), where people with RA can tell their stories, exchange experiences, and where she performs disclosure about the disease. She also takes part in other initiatives, as the NGO EncontrAR, always focused on drawing attention for the disease and in the empowerment of the patients. As the embassador of the NGO EncontrAR, she has expressed her support to the project LeishMania, as a possible treatment that can make the lives of people with RA better. She gave us a small testimony about her experience with RA, which is reproduced below.
Name: Priscila Torres da Silva Age: 35 Years living with RA: 09 Scholarity: Technical in nursing, with specialization in Hospital Quality Management; couldn’t finish a degree in nursing because of the RA. Today, studies Social Communication - Journalism. Occupation: President of EncontrAR group, Vice-President at Grupar-RP, Social Entrepreneur at Blogueiros da Saúde, creator and writer at the blog "Artrite Reumatoide: dor compartilhada é dor diminuída". Authoress of #TwittAR, a campaign of social mobilization in social networks to update the Clinical Protocol and Therapeutic Guidelines of Rheumatoid Arthritis at Brazilian Ministry of Health. Creator of the project Blogueiros da Saúde (Health Bloggers), a social project of empowerment and education of bloggers and digital health activists.
1) What is the EncontrAR Group? Well aware of the limitations and difficulties faced by RA patients, Priscila decided to help them by creating the blog "Reumathoid arthritis: shared pain is reduced pain” (free translation from: “Artrite Reumatoide: dor compartilhada é dor diminuída"). This is the biggest self-help group in Brazil, and it is part of the Arthritis Foundation Registry Workshop Improving Health Outcomes for People with Arthritis e World Arthritis Day/EULAR, participating intensively in the a campaign to increase worldwide awareness about RA. The blog following aims include:
To bring together RA patients, always providing a warm welcome to new members. To provide information about specialized doctors, drugs of choice to treat RA and complementary treatments. To emphasize the importance of a rigorous complaince to the treatment and a constant support by specialized doctors. To promote discussions about laws and public policies which could help RA patients, and to propose the creation of new laws based on the patient needs. To encourage interactions with other RA patients or other patients with related diseases. To increase the awareness about family support to RA patients.
More information (in Portuguese) can be find here
