Rare diseases are more common than most people may think. While the diseases themselves may be rare, rare diseases as a whole affect more than 25-30 million (or 1 in 10) Americans according to the National Organization for Rare Disorders (NORD). This is a pervasive issue; 1 in 10 Americans are suffering from diseases that we may know very little about (or very little about how to treat them). Dr. Kamala Maddali has a uniquely personal perspective on this issue. Kamala, herself a rare disease patient, believes that we must raise awareness for the fight against rare diseases if we can hope to increase research and funding for this widespread ailment. 

Kamala’s Rise and Contribution to Healthcare

Dr. Kamala Maddali, DVM, PhD is an accomplished veterinarian, clinician-scientist, and healthcare innovator. She earned a doctorate in veterinary medicine from the Sri Venkateswara Veterinary University in India and a doctorate in pharmacology from the University of Missouri-Columbia. Starting her professional career, Kamala worked hard to rise through the ranks and become a precision medicine executive at Fortune 100 and 500 companies like Merck & Co, Quintiles, IQVIA, and Quest Diagnostics. With two decades of experience implementing strategic corporate initiatives, she has played an important role in the considerable advancement of precision medicine over the past 20 years.

Discovery of Rare Disease

Everything changed in 2011, when Kamala discovered that she has a rare disease. Throughout this difficult experience, she has battled Multiple Sclerosis-type symptoms, and eventually, Parkinson’s disease-like symptoms. Since her diagnosis, she has been an active and outspoken supporter of rare disease awareness and advocacy. In this way, she is not only serving the community of those living with rare diseases, she is an invaluable part of it.

A Unique Perspective

Kamala’s background has given her a particularly informed view of her situation. Having special knowledge in the area of genomics and precision medicine related to cancer, she has seen how new advancements in the areas of genes and diseases have allowed many patients to make better choices about their diagnosis and treatment. “We understand that no two cancer patients are alike, nor are their treatment journeys,” she explains. “When it comes to my own health condition, I have been trying for a long time to find the right diagnosis. It never occurred to me that it would take me a decade to break through impossible barriers so that I could get genetic sequencing to try to unravel the mystery.” 

Despite many frustrations throughout this process, Kamala has maintained an inspiring strength of will. Though her own research and treatment journey is far from over, she has resolved to never stop trying and never give up hope. “Despite very recent failures to identify a gene in my case, I need to look at ways we can cope with new normals while also actively pursuing more specialized testing in the future as science advances our understanding of our bodies.”

New Technology Could Tip the Scales in the Battle Against Rare Diseases

Science and innovation have brought what Kamala refers to as “human body intelligence” to its best and most authentic stage, paving the way for incredible new methods for identifying and treating rare diseases — but according to her, access and adoption for this type of tech are less than we should expect. She believes that our access to knowledge driven by science and innovation must be accelerated with the development of processes, technologies, and enabling tools. According to her assessment, Augmented Intelligence (AI) – which was previously termed “Artificial Intelligence” in healthcare – has the greatest potential in this regard.

Kamala’s Journey as Patient and Professional

Kamala’s experience battling a rare disease has had a major impact on her professional journey. As she recalls, “I have delved into deep experiences and artifacts of healthcare through my personal fight and professional commitment to genomics and precision medicine.” She helps others to fight rare diseases, all while working to understand and find innovative ways to treat her own. Kamala discusses her inspiring, one-of-a-kind journey in greater detail in her new autobiography, Becoming a Kamala, available now from Freiling Publishing.

Learn more about Becoming a Kamala at https://becomingakamala.com/ or buy it on Amazon.

Find Kamala on LinkedIn.