Rallying to fight, bring awareness to rare diseases
In recognition of Rare Disease Day 2015, the community rallied last Saturday to Barbara Croker’s side in her battle against Dercum’s disease, a rare affliction that’s required her to undergo 43 surgeries in the last 15 years.
Commemorated on the last day of February, this year’s Rare Disease Day marks the eighth time the international event has been celebrated. The campaign began in Europe with a mission to raise public awareness about rare diseases and their impact on patients' lives.
With a slogan “Day by day, hand in hand,” the event united more than 80 countries to advocate for treatments, care and resources needed by countless rare disease patients and their families.
According to the Rare Disease Day organizers’ press release, a disease is considered rare when it affects less than 1 in 2,000. More than 6,000 different rare diseases have been identified, affecting over 60 million people in Europe and the US alone.
Because of the low prevalence of each disease, medical expertise of conditions is often rare, knowledge of ailments is scarce, and research is limited or non-existent.
“Just call me lucky,” joked Barbara Lyons Croker. “There’s probably only two or three of us in Rhode Island that have this condition, it’s that rare. We have one doctor in Arizona that’s working on this, and there’s no cure.”
That condition is Adiposis Dolorosa – or Dercum’s disease - a condition that is characterized by multiple, painful fatty tumors.
Born in Warwick, Croker graduated from Toll Gate High School in 1984. She went on to receive her degree in nursing from the Community College of Rhode Island. In 1999, she was diagnosed with the condition and has been fighting it since.
“I’ve had 43 surgeries in just over 15 years. I’ve had a 25 pound tumor taken out of my stomach three times,” said Croker. “They press on my nerves, they grow in the nerves and muscles, and it’s very painful, debilitating.”
To raise awareness of the condition and funds for research, a guest bartender fundraising party that drew scores of supporters was held last weekend at Tavern 12 in Warwick. Friends and staff bartenders donated all tips and raffles were held as partygoers dined on fare donated by the restaurant.
“I’m very happy to be a part of this” said Tavern 12 owner Matt DeSarli. “Anything I can do to be involved, and to see all of these people here to support such a good cause, is just fantastic.”
“Part of our mission is to raise awareness, and we’ve had a phenomenal turnout today,” said James Greene, president of the non-profit Rhode Island Dercum’s Research Fund, who anticipated the event raised about $10,000. “All the money that we raise goes to Dr. Karen Herbst at the University of Arizona, she is the one doctor that is leading the research into the disease.”
While the condition is rare, prior awareness generating events such as this one have been successful in getting the message to those who may need it most.
“People have come out to us and told us ‘Now I have an explanation for why I have these lumps on my back and body,’” said Greene of other patients with the disease.
“Oh this is just great today. All my friends and family are here,” said Croker. “I really appreciate all the support we’ve received.”
For information on Rare Disease Day, visit http://www.rarediseaseday.org/. Additional information on the Rhode Island Dercum’s Research fund may be found at https://www.facebook.com/pages/RI-Dercums-Research-Fund-Inc/110193649156.