We have gathered some updates from the worldwide RAD community to share with you.

Dissolution of the American Pain Foundation

On May 3, 2012, the Board of Directors of the American Pain Foundation (APF) formally voted to dissolve the American Pain Foundation citing “irreparable economic circumstances”.  In an e-mail and on their website (http://www.painfoundation.org), the APF states that it enacted key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine, documenting the shocking numbers of US citizens who live with pain.  As part of the report, there was a call for immediate changes to address gaps in care.

FDRS remains committed to recognizing pain as one of the major symptoms of several rare adipose disorders, and will support the treatment of pain and the search for new pain treatments with fewer side effects and greater efficacy for our population.

Last Call for FDRS President Candidates

Several great candidates have thrown their hat in the ring to become the next President of FDRS, when Tina Tranfaglia steps down in July.  We are grateful to see such enthusiastic and qualified candidates stepping forward.  If you have been thinking of nominating yourself for the President role, then now is the time to act.  We will accept nominations until the end of May.  To learn more about the role, please visit the job description we posted about a week ago. You can view Tina’s resignation letter and other recent board changes here.

Swedish Researchers Rally for Dercum’s Disease

On May 11, 2012, seven patients with Dercum’s Disease joined Dr. Ola Winqvist and colleagues at the Karolinska Institute in Stockholm. Dr. Winqvist spoke in depth about the immune system and its involvement in Dercum’s Disease. Importantly, he described a specialized column that clears inflammatory cells from the blood – a possible treatment for Dercum’s disease in the future.

Dr. Olle Haglund gave an overview of Dercum’s Disease and provided advice on diet, supplements and life style. He also addressed the Cyclic Variations in Adaptive Conditioning™ (CVAC™) process as a means for reducing pain, how to use lymph therapy to improve lymph flow, and cardiovascular stiffness.

Dr. Winqvist completed an analysis of some aspects of the immune system in the blood of people with Dercum’s disease who have Type II, or widespread affected tissue with small nodules in the fat, by fluorescence assisted cell sorting (FACS).  He also wanted to examine the immune system in people with Type III, who have larger painful lipomas, often in the absence of obesity.

The patients with primarily Type III Dercum’s Disease who attended the meeting provided blood to Dr. Winqvist for further analyses. All of the people with Dercum’s disease shared their stories and found they had a lot in common. Many people noted their lipomas started after an infection or trauma.

FDRS helped to recruit people for this meeting and will continue to support research in all RADs across the globe.  We want to give special thanks to Staffan Erickson who worked tirelessly to encourage people to attend this meeting and Staffan’s girlfriend, Amielyn Garcia-Manzano, for taking pictures at the event.  We are grateful for Drs. Winqvist and Haglund and their continued interest in Dercum’s Disease and kudos to all the people who took the time to attend the meeting.