In 2004, Greg Pacheco’s life took an unexpected turn when he was diagnosed with a very rare and incurable condition known as Castleman’s Disease. Pacheco has since become an advocate for discovering why the disease occurs and how it can be stopped.To that end, Pacheco and his wife, Charlyn, have secured donations totaling about $120,000 to purchase equipment dedicated to Castleman’s Disease research at the University of Arkansas for Medical Sciences (UAMS).
To honor his efforts and his fight against the disease, the lab, which is located in the UAMS Winthrop P. Rockefeller Cancer Institute, was named the Gregory Pacheco Laboratory for Castleman’s Research at a ceremony April 23.
“Thanks to Greg and Charlyn’s efforts, we are another step closer to finding new and more effective treatments for Castleman’s Disease, as well as unlocking the causes of this rare condition,” said Frits van Rhee, M.D., Ph.D., director of clinical research for the UAMS Myeloma Institute for Research and Therapy. Van Rhee is one of the country’s leading experts in Castleman’s Disease, a benign condition of the lymph nodes with symptoms that include extreme fatigue, night sweats, skin irritation, inflammation and shortness of breath.
UAMS is one of the country’s leading referral centers. It unknown how many people have Castleman’s Disease, but UAMS treats about 50 patients with the condition. van Rhee’s research includes examining the genetic differences that predispose a person to Castleman’s and whether those differences — if they exist — affect how the person responds to treatment. As a patient at UAMS, Pacheco travels from his Paso Robles, Calif., home to Little Rock about once a month to receive intravenous antibody treatment supervised by van Rhee. Pacheco has maintained this rigorous travel schedule for more than four years. His first two years of treatment required travel to Little Rock every two weeks. The drug that he receives, which is in the clinical trial stage, is called MRA and is designed to block the interaction between the immune protein known as Interleukin 6 (IL-6) and its receptor. Castleman’s patients overproduce IL-6, which causes the debilitating symptoms.
“Dr. van Rhee gave me my life back,” Pacheco said. “For about a year before I was diagnosed with Castleman’s, my exhaustion was so severe that I could barely walk from my front door to my car. Now, I’m able to share quality time with my family again.”
Because Castleman’s is so rare and has symptoms similar to other conditions, it often is misdiagnosed. Pacheco’s condition deteriorated for about 18 months before his definitive diagnosis by a physician in California. He then was referred to UAMS to participate in van Rhee’s clinical trial of MRA.
The Pachecos have established a nonprofit organization called CARE (Castleman’s Awareness and Research Effort) to raise funds designated for the lab at UAMS. Carnival for CARE, a family-oriented event featuring barbecue, games and live music, is planned for June 7 at River Oaks Hot Springs in Paso Robles, as their next fundraising event.
FOR MORE INFORMATION REGARDING CASTLEMAN'S DISEASE:
http://glue.yahoo.com/page/castleman+disease http://rarediseases.about.com/od/rarediseasesc/a/castleman.htm http://www.uamshealth.com/?id=4805&sid=1 http://www.pasoroblespress.com/v2_main_page.php
