Following on the heels of the annual ACR scientific assembly (and my interview with Dr. Wallace), I reached out to Sandra Raymond, President and Chief Executive Officer of the Lupus Foundation of America, to discuss lupus from the patient perspective. Sandra’s rhinovirus infection (she had a cold) did not stop her from completing an excellent interview with me.
Listen to the podcast here, or read a summary of the interview below.
Dr. Val: Tell me about the Lupus Foundation of America (LFA).
Raymond: The Lupus Foundation of America is the nation’s leading organization dedicated to finding the causes and cure for lupus. We also provide services, support, and hope to all people living with lupus. We have a national research program called “Bringing Down The Barriers” and we fund grants to researchers in academic institutions across the country. We are also very active on Capitol Hill, lobbying for research and educational efforts. In a few months we’ll be launching a public awareness campaign to help Americans understand this disease.
Dr. Val: Of which key accomplishment of the LFA are you most proud?
Raymond: LFA has been able to expand medical research efforts for lupus. This not only gets us closer to finding a cure, but it offers hope to those who are living with the disease.
Dr. Val: In your view, what do patients with lupus need the most?
Raymond: They need safe, effective, and well-tolerated treatments. November the 20th, 2008, marks 50 years without a new, approved treatment for lupus. The treatments that patients are currently taking can be very harsh. They sometimes cause side effects that are worse than lupus itself! We must step up our research efforts to discover safe and effective treatments to bring this disease under control and provide patients with a better quality of life.
The good news is that there are quite a few pioneering biotech companies who are investing money in finding a cure for lupus. So there may be new drugs on the horizon.
Autoimmune diseases affect 23 million Americans. Lupus accounts for at least 1 million of those, but if we can figure out what causes lupus, there are implications for all disorders of the immune system.
Dr. Val: Is lupus being properly diagnosed?
It’s amazing to me how many people have underlying lupus and don’t know it. I’ve known generations of women in the same family who didn’t realize they had lupus. Epidemiological data suggest that here may be as many as 2 million people in the United States with lupus, and we’re only aware of half of the cases now.
Of course, people are often misdiagnosed as having lupus. Patients at risk for lupus (it has a genetic component) should seek out a lupus expert who can confirm or clarify their diagnosis once and for all. Part of the reason why lupus is overdiagnosed is that the underlying pathophysiology (causes) are not fully understood.
Dr. Val: What advice do you have for someone newly diagnosed with Lupus?
Raymond: If people are having concerning symptoms, they should check out the LFA website and read about the disease. If their symptoms closely match those we describe on our website, then they can call us to get connected with a lupus expert in their area to confirm the diagnosis (if they’re doctor is not well trained in the diagnosis and treatment of the disease).
Dr. Val: What advice do you have for family members of patients with Lupus?
Raymond: Family members need to know that patients really need their support. Lupus is an unpredictable disease. One day you can be feeling perfectly fine and the next day you can hardly get out of bed. That’s just the nature of the disease. It’s important for family members to learn all they can about lupus and show patience to their loved ones who have it.
Dr. Val: What’s the most important thing for Americans to know about Lupus?
Raymond: Lupus is a complex, chronic, autoimmune disease that can lead to the destruction of any organ system in the body. This is primarily a women’s disease – 90% of all cases affect women, especially in their childbearing years (ages 18-44). If the American public doesn’t know about the disease, congress will not understand its importance, and will not see that we’re investing enough money in lupus research. It’s extremely important that this research effort be expanded. Lupus is the prototypical autoimmune disease – if we can figure out how it works, we can apply this knowledge to all autoimmune diseases.
Check out the blog, “But You Don’t Look Sick” written by Christine Miseradino. Christine is a young woman with lupus.