Autoimmune Disease Disparity and Challenges

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Dr. Diamond.

One of the greatest medical challenges we face is attempting to better identify and understand the diseases that threaten the quality of life of countless individuals. Making this even more difficult is the need to further comprehend how these diseases impact people differently based on factors including age, race and gender. The vast world of autoimmune diseases is the perfect example.

Focusing on the study of autoimmune diseases for nearly 40 years, I have spent my life dedicated to the research of these continually growing destructive diseases – their causes, challenges to diagnosis and the barriers patients experience when it comes to committing to effective treatments and medications. According to the American Autoimmune Related Disease Association (AARDA), more than 50 million Americans have an autoimmune disease. It’s also estimated that there are more than 100 different types of autoimmune diseases, which mainly impact women. Further demonstrating how these diseases disproportionately affect individuals, one of the areas of increased attention is the impact of autoimmune diseases such as lupus on African Americans – especially African American women – and how we, as medical professionals, can help to better educate and empower this subset of the population to seek proper diagnosis and treatment.

Lupus is a serious autoimmune disease that can affect anyone, although it is most commonly diagnosed in women between the ages of 15 and 44 and symptoms like fatigue, pain or swelling in joints, skin rashes, and fevers often serve as initial warning signs. While the exact cause of lupus is largely unknown, the disease is an attack by the immune system on the healthy cells of the body and can potentially damage organs, blood vessels, muscles, joints, and the central nervous system. While lifestyle changes and medical treatments can help control the disease, there is no known cure.

The complicated and often frustrating journey faced by those with autoimmune diseases has led to increased collaboration and innovative thinking on how to most effectively address the needs of these patients. In February of this year, the world’s first Autoimmunity Institute opened its doors at West Penn Hospital – part of the Allegheny Health Network. The Institute combines multispecialty care with cutting-edge research, patient education and advocacy to advance the treatment of autoimmune diseases and accelerate discovery of a cure for more than 100 different disease types. Patients diagnosed with an autoimmune disorder often need more than one specialist in their care, and as a result, many get lost trying to navigate the health care system. The Institute is working to change this.

The medical community in and out of the Autoimmunity Institute remains committed to developing tomorrow’s treatments for diseases like lupus, but those individuals suffering today are often left wondering what they can do and how they can best diagnose the source of their symptoms. It is important to note that persistence is a vitally important aspect when attempting to understand an autoimmune diagnosis. It can sometimes take up to three years to fully be diagnosed. During this time, listen to your body, pay close attention to your symptoms and remain strong in your search for answers. AARDA also recommends the following to help diagnose your condition:

· Do your own family medical history

· Keep a symptom list

· Seek referrals to good physicians

· Obtain a thorough clinical examination

· Get a second, third, and even fourth opinion

· Partner with physicians to manage your disease

· Learn to deal early on with the long-term effects of autoimmune disease

Remember that securing a diagnosis can be a challenging journey, but one you must remain committed to. Whatever your diagnosis, there are likely treatments that can help alleviate symptoms and help you regain control of your life and chart your course toward a healthier future.

Dr. Diamond, Chair of AARDA’s National Scientific Advisory Board, is Head of the Autoimmune Disease Center at The Feinstein Institute for Medical Research, North Shore-Long Island Jewish Health System, in Manhasset, New York, and professor of medicine at the Albert Einstein College of Medicine, New York. She has dedicated her professional career to patients with lupus.

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