Treatment of Rare SARDS: Systemic Lupus Erythematous and Idiopathic Inflammatory Myopathies - Episode 7

Improving Rheumatology: Patient Education and Advocacy

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W. Hayes Wilson, MD, and Kostas Botsoglou, MD, reflect on the importance of patient education and advocacy in managing SARDs.

Transcript:

W. Hayes Wilson, MD: You brought up a good point too, about advocacy. I’m sure you’ve done a lot with the Arthritis Foundation and Lupus Foundation of America. A large part of what we do is awareness. And a large part of what we do is education, which is helping the patient understand. Because if I can’t cure their disease, I always tell people that there are only 2 goals for the Arthritis Foundation. One is to find a cure for arthritis. And of course, there are over a hundred different varieties of arthritis-related illnesses. Then the other one, we haven’t gotten there yet, is to support the people who are providing care, and to support the people who are receiving care. That’s part of what we do. But it’s important to hook people up with good resources. We refer people frequently to the American College of Rheumatology [ACR], to the Arthritis Foundation, to the Lupus Foundation of America. And we have support groups. For young people with arthritis, I’m sure you have this as well, we have camp E-Ko-Wah, which is for kids to go to camp just a little outside of Atlanta, to be around other kids and to understand that they’re not alone. And that’s true of adults too.

One of the things that we have to be careful about and cognizant of, is it’s life-changing to be told you’ve got, and it sounds a little harsh, but you’ve got an incurable disease because we don’t have a cure for arthritis. We don’t have a cure for lupus. We don’t have a cure for inflammatory myopathies. But we’re going to be there with you along the way. And you’re going to get more questions, and we’re going to answer more questions. If you have a problem, you’re going to call us and we’re going to help you handle the problem. They’re worried about their disease. They’re worried about, “What’s going to become of me?” They’re worried about treatment. And everybody wants to know, “Am I going to get better? Am I going to get well?” And you always say, well, absolutely. I mean, that’s our goal, is to make you better. And people are always saying, “Am I going to be crippled?” And the answer is, not on my watch. But we do the best we can. Along with that, what are some of the reassuring things that you like to tell your patients, right after you give them the bad news that they’ve got a chronic incurable illness?

Kostas N. Botsoglou, MD: You nailed it, that nobody wants to be told they have a chronic condition. But that’s also what drew me into rheumatology. Because we follow these patients, we marry these patients. We see them progress. And although we don’t have cures, the treatment options we have now are far better than 20, 30 years ago. I like to also get their caregivers involved. If I feel like they’re not quite comprehending the severity of the disease, I want their family members to come, their spouse to understand what we’re doing, why we are here. I also sign them up to support groups to meet other patients with similar conditions, so they can share. The Lupus Foundation has a great resource here. They organize annual walks and fundraisers, and so forth. It’s great networking for other patients, especially when the disease is so heterogeneous. And we also refer them to the ACR because we know our patients are looking up things on Google, so at least have them look it up from a reputable source that is trusted. And it’s something that we also believe in. I suggest the American College of Rheumatology website for any disease state information.

W. Hayes Wilson, MD: I completely agree. I want to thank all those out there who are watching this HCPLive® Peers and Perspectives. If you enjoyed the content, please subscribe to our e-newsletters to receive upcoming programs and other great content right in your inbox.

Transcript edited for clarity.