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We have all been touched by the tragic events of September 11, 2001. The events of that day are forever etched in our hearts and minds. We mourn for the thousands who lost their lives and we pray for their families and friends. We applaud the dedicated efforts of all those who helped with the relief efforts and continue to provide comfort and solace. The terrorists' attacks have dramatically changed our country and our perception of the future. Since that day, soul-searching questions have been asked. How safe are we from future attacks? How do we fight terrorism? What is important in my own life now? What needs to be done? And we have asked questions that address the core of what we do. What difference does my work make? Why do we as rheumatology health professionals do what we do? What difference do we make? I would like to share what I have learned as to why health professionals are committed to rheumatology.

One reason we do the work we do is that we are challenged by the complexity of chronic illness and motivated by the courage of our patients. The term rheumatic disease is used as an umbrella for more than 100 types of arthritis. It is a potentially devastating condition affecting more than 43 million Americans, including 8.4 million young adults and 300,000 children. But arthritis is more than a statistic. Behind each number is a personal story of individuals coping with and taking control of their arthritis. Here are some stories that remind us just how devastating it is to be diagnosed with a rheumatic disease.

  • “I was diagnosed with fibromyalgia a year ago. I now hurt most of the time. Some days I just want to give up. No one understands what I am going through.”

  • “My brother was diagnosed with ankylosing spondylitis. He is a father of 4. I cannot believe that this is a disease he has to lay down and let it take over his life. I want to know what treatments would help. My brother is not a fighter like me so I will fight for him.”

  • “My biggest challenge as a result of my arthritis is how to stay connected with my community. Because I have to manage my energy so carefully I do not participate in everything that I would normally do. I can't be as helpful as I would like to be, because I cannot take the risk of overextending myself. So what happens is that the few things I choose to do are very important to me.”

The courage of our patients motivates us to do our best to advance our field.

What is it we do when rheumatology health professionals care for people with arthritis? Our goals are to help the patient achieve optimal function and relief from pain and other symptoms, and to adapt successfully to disruptions in lifestyle. We assess a patient's health status, resources and support systems, living arrangement, and interests. Environments are evaluated to determine if and how they could be altered to enhance the patient's capabilities. We formulate diagnoses and identify outcomes in order to manage health problems, maximize functional abilities, prevent or minimize disabilities, and promote health maintenance. Collaborating with the patient and family and other health care professionals, we develop a plan of care to attain individualized outcomes. We prescribe, order, and implement interventions and treatments. We help patients solve problems posed by the effects of rheumatic disease on activities of daily living, and on family and work roles. We provide clinical coordination and case management, and advocate for the patient and family within a health care setting, the community, and the legislative arena. We offer support groups so people with arthritis and their family members are not alone or isolated in learning how to manage a chronic condition. We conduct research to evaluate the effectiveness of our interventions on health outcomes. By training the next generation of clinicians, researchers, and educators, we make a difference.

We are challenged by the complexity of chronic conditions. Even for the seasoned practitioner, rheumatic diseases are difficult to diagnose and treat. Most rheumatic diseases still have no cure and thus the management strategy is focused on helping the individual obtain the greatest benefit from available treatments. Many times this includes helping people make lifestyle changes. Helping others make behavior changes is incredibly challenging. Our treatment armamentarium has expanded greatly in recent years but is still limited. Frequently, multiple body systems are involved, thus increasing the complexity of diagnosis and management.

The work we do is demanding and strenuous. Despite the trials and tribulations of each of our individual professions, we stay committed. We are compassionate for those with and affected by arthritis. We are moved by the incredible day-to-day heroism of our patients who are living with a chronic illness. When we hear about our patients' success stories, we applaud. When we hear about their failures, we offer our help.

Another reason we do the work we do is because we want to make a difference for the people who live with arthritis. One way we do this is through our scientific advances. We have witnessed remarkable advances in arthritis treatment and dramatic changes in the care we provide. We find ourselves caught in a momentum of immense transformation as the evidence-base of our work expands. Both clinical and quality-of-life randomized clinical trials have been conducted and published by rheumatology health professionals. Our scholarship has advanced the understanding and management of rheumatic diseases.

There are several areas where the work of rheumatology health professionals has been pivotal in advancing the field of rheumatology. Work by rheumatology health professionals has drastically altered the paradigm of clinical care in rheumatology. We have developed and tested the Arthritis Self-Help Course, also known as the Arthritis Self-Management program, and demonstrated that several self-management interventions are effective in long-term pain relief. The evidence that self-management is effective for people with arthritis has led to more patient-centered care and given new meaning to the patient being an active member of the team.

Our collaborative efforts in the international arena know no geographical barriers. For example, the Arthritis Self-Help Course has been translated into Spanish, French, Chinese, Danish, and Icelandic. There are Arthritis Self-Management leaders in countries such as, but not limited to, the United States, Iceland, Demark, China, Poland, Hong Kong, Lithuania, the United Kingdom, Canada, New Zealand, and South Africa. As culturally sensitive trainers, we make a difference.

Epidemiologic discoveries have led to increased initiatives at the national and state level that are aimed at the prevention of arthritis. Studies have shown that increased physical activity has multiple benefits for people with rheumatic disease and does not increase or exacerbate the disease. We know the safety and effectiveness of different types of exercise at health-promoting levels for people with a variety of rheumatic diseases. We have acknowledged the impact that not only pain but also fatigue have on function. We have learned the relevance of psychological factors on adherence to treatment regimens and make more concerted efforts at addressing the known barriers. It was in 1999 that the Arthritis Foundation joined together with the Centers for Disease Control and the Association of State and Territorial Health Officials to develop the National Arthritis Action Plan (NAAP). For the first time, attention has been placed on the prevention rather than the cure of arthritis. As epidemiologists and public health specialists, we make a difference.

We serve as advocates on behalf of people with arthritis. Nowhere is advocacy needed more than with our most vulnerable groups, such as children with juvenile arthritis. Our successes include the Children's Health Act of 2000, which improves the quality of life for children living with arthritis. In this act, Congress for the first time recognized juvenile arthritis as a national health priority, providing federal support for juvenile arthritis research. Rheumatology health professionals were in Congress guiding and moving this bill into the hands of our legislators. As advocates, we make a difference.

The enactment of the Americans with Disabilities Act provides the potential to improve the ability of people with rheumatic diseases to work. Although we are slowly making progress in this area, there is still very little vocational rehabilitation for persons with rheumatic disease. More interventions are needed at a primary level of prevention, such as for persons who are at risk but still employed. As vocational rehabilitation specialists, we make a difference.

We have also developed effective ways to negotiate with the insurance industry. Knowledge of costs and access to health care are critical issues. Health professionals spend time educating patients and family members on how to get what they need from their health plans. Due to the limited number of pediatric providers, many of us treat children from a multistate area and therefore are familiar with the nuances of multiple health plans. As individuals knowledgeable about health insurance plans, we make a difference.

Most recently, our scientist colleagues have made discoveries in fundamental biology of rheumatic diseases that have led to new therapeutics. These agents have revolutionized the treatment of people with rheumatic diseases. As partners in the use of these new drugs, we make a difference.

And last, we do the work we do because of the reinforcement of our ideals and goals we receive as members of the American College of Rheumatology and the Association of Rheumatology Health Professionals. Bright minds and humanistic professionals are in the field of rheumatology. What keeps us engaged in rheumatology is our colleagues. The debates at the annual meetings are stimulating. The scientific meetings are inspiring. The collaborations with investigators are on the cutting edge of new ways of thinking. The field of rheumatology is diverse and ever changing. The interdisciplinary opportunities improve our effectiveness and keep us professionally stimulated. Basic and clinical sciences are connected in rheumatology. Although there is significant diversity in the members of the team, there is a shared mission. The diversity is not represented only in the disciplines, but also in the perspectives each professional brings to a case. This diversity allows for a greater intellectual and social exchange not found in our primary disciplines. The sense of collegiality far surpasses that of other professional groups. Making the connection with each and every patient and providing care and support are important to each of us. The intimacy shared with patients in their most vulnerable times is stimulating and feeds our passion. For those of us that personally have a rheumatic disease or have a child with a rheumatic disease, working in rheumatology is especially meaningful.

In conclusion, what we do as rheumatology health professionals is truly important. We clearly make a difference in the lives of people with rheumatic disease. We are extremely effective as rheumatology health professionals. Let us continue to work together to ensure that people with rheumatic diseases receive the best care. Every rheumatology health professional is an inspirational and influential force in the fight against rheumatic disease. When we work together, we are one of the most powerful forces to help individuals, families, and communities affected by rheumatic disease. We make a difference.

Acknowledgements

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  2. Acknowledgements

The author acknowledges the many ARHP members who so generously shared their perspectives contained within this article.