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Feature:
Rare Diseases

"Beyond the Diagnosis" Making the Invisible Patients Visible

The "Beyond the Diagnosis" art exhibit's focus is the rare disease patient. Artists have donated their time and talents to create paintings of rare disease patients for this groundbreaking portrait collection. The exhibit will travel to medical schools and hospitals across the country, encouraging the medical community to look "beyond the diagnosis" to the patient. The exhibit has already been represented by displays in the Harvard Medical School's Gordon Hall and the Clinical Center at the National Institutes of Health. The paintings are by artists from all over the world—the United Kingdom, Pakistan, Australia, India, and several European countries—as well as the United States. Katherine Belle and Case are two of the approximately 100 patients who have a painting either finished or under way.

Portrait of Katherine Belle. Artist: Lori Jeremiah

Katherine Belle

"Born healthy in July 2011, Katherine Belle plateaued in her motor development at 13 months old and has never walked (age 3). After exhausting all tests, two doctors have given a 90 percent diagnosis of infantile neuroaxonal dystrophy. However, uncertainties remain, and further testing is under way. Katherine Belle is a beautiful, bright, and happy 3-year-old who loves cupcakes, books, mermaids, bunnies, Peppa Pig, and teasing her mommy and daddy. Katherine is our life's greatest blessing."

—Glenda, Katherine Belle's mom

Portrait of Case. Artist: Charlie Hall

Case

"Case is 8 years old and faces every day with exuberant joy. He loves playing guitar, riding his pedal bike, bowling on Xbox Kinect, and swinging in his new sensory room. During his weekly four-hour infusion, his mom puts his pump and medicine in a backpack so he can jam to his favorite music videos. After being diagnosed with Hunter syndrome at 2, Case has endured (with a smile) more than 400 infusions, 100 flights to a clinical trial, 50 spinal taps, 10 surgeries, five Port-a-Caths, and one medical tattoo. He is quite proud of getting a tattoo at the tender age of 4."

—Melissa, Case's mom

Read More "Rare Diseases" Articles

Putting A Face On Rare Diseases / "Beyond the Diagnosis" Making the Invisible Patients Visible / On the Front Lines of Rare Disease Research

Spring 2016 Issue: Volume 11 Number 1 Page 17