A great victory for our patients suffering from cicatricial alopecia—Dr. Pratima Karnik, assistant professor of dermatology at Cleveland’s Case Western Reserve University, received a $1.77 National Institutes of Health grant to fund a 5 year study on hair follicle, stem cell specific, PPAR-gamma deficiency in scarring alopecia.
Her research, published in the Journal of Investigative Dermatology, linked a defect in lipid processing and peroxisome biogenesis to cicatricial alopecia. As a result, it paved the way for a breakthrough finding in understanding the pathophysiology of the permanent hair loss disorder (J Invest Dermatol. 2009 May;129(5):1066-70).
Dr. Karnik and her colleagues found that unprocessed lipids are responsible for developing scarring hair loss. Their research suggests that processed lipids are necessary for hair growth and unprocessed lipids are toxic to hair. The bench-side research has led to clinical findings that treating patients with drugs that enhance lipid processing may relieve the clinical symptoms of the disorder.
Central centrifugal cicatricial alopecia, a scarring hair loss prevalent in African Americans, has no well-defined cause and has been difficult to and frustrating for patients.
Dr. Karnik’s research, and the work of the Cicatricial Alopecia Research Foundation (www.carfintl.org), is helping patients and physicians understand the biology, natural history, and treatment options for patients.
I personally attended a session with NIH Director Dr. Francis S. Collins, on behalf of CARF, where underrepresented and underfunded organizations had a chance to voice their opinions to the NIH and gain the well deserved attention they need.
Dr. Collins suggested that a new structure of communication was being established at the NIH, noting that any organization can send a brief summary of issues it would like to bring to the attention of the NIH. The e-mail address is nih-listens@nih.gov. He ensured us he would look at every e-mail and respond to each one.
Often, rare diseases are difficult to study given the lack of attention and funding. The work of Dr. Karnik and her collaborative team, and organizations like CARF, give hope to the thousands of people suffering from cicatricial alopecia.