Nov. 05, 2013

Living Well: More Than Just an Idea

by Paola Daly, Lupus Foundation of America's Outcomes & Health Senior Manager

This year’s annual American College of Rheumatology meeting in San Diego brought together approximately 15,000 excited visitors to attend thousands of lively sessions and meetings. Several hundred of these meetings focused on lupus, drawing in visitors to learn about new findings in treatments, quality of life and living well with lupus. After I attended more than 15 sessions about lupus, two overall topics stayed with me as I traveled back to Washington, DC: infection prevention and reproductive health. Regardless of the specific topic, the overall theme was about living well with lupus. Living well can seem like a fuzzy concept that is difficult to define and it may even feel hazy to you. The truth is, it can seem that way, if you can’t walk away with concrete recommendations. And that’s why I liked each of these topics: they presented practical, concrete steps that people with lupus, and their care teams, can take to make living well with lupus a reality.

With lupus, infections are not trivial issues. They can cause serious complications, are difficult to fight off, and contribute significantly to death rates. In one study, pneumonia was the second most common cause of hospitalization, right after flares. While these are frightening facts, researchers point out that there are effective vaccines available to help fight and prevent these infections. The flu vaccine and the pneumococcal vaccine are just two of these, and they are safe and available to help you fight off infections that can deeply affect your health. Talk with your healthcare provider and make sure all your shots are up to date.

Equally important to your well-being is the topic of reproductive health. Researchers from around the world, as far away as Qatar and Spain, presented in-depth research on lupus and reproductive health. A common thread throughout these presentations was the need to look at reproductive health throughout a woman’s life-span. It’s not just about pregnancy; it’s about health for the whole person and living well for a lifetime. One session I attended pointed out that some rheumatologists don’t feel comfortable (or prepared) talking to their patients about reproductive and sexual health. This rheumatology clinic worked toward a practical solution by calling the reproductive health clinic and helping them to understand more about lupus. This way, the medical staff at the reproductive health clinic and the rheumatologists were on the same page about providing the best care to their patients. I also viewed a scientific poster presentation that emphasized that you can play an active role in your reproductive healthcare. For example, each time you and your doctor decide to change your treatment, talk with him or her about how this might affect family planning and what steps you can take to prepare for a pregnancy, if that is something you desire. 

Overall, the focus on preventive health and living well gave me hope. It’s encouraging to know that, even as we search for new and better lupus treatments, you can still take practical steps to manage your lupus and help you live well with a very difficult disease. Importantly, it also made me realize that ,more and more, healthcare professionals are focusing not just on what’s going on inside your cells, but also what’s going on with you as a person – your well-being and your quality of life. This double focus reinforces the idea that living well with lupus is far from a hazy concept. Rather it’s one of the most important views that health professionals can take to provide the best care and treatment for you. 

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