Crohn's survivor turns resolve to stamp campaign
By: Chandra M. Hayslett
Star-Ledger
August 14, 2008
For the last nine years, Gideon Sofer has been working to get a postage stamp that promotes awareness of Crohn's disease, a chronic intestinal disorder he's battled since birth.
Sofer, a former Highland Park resident, is now one step closer.
U.S. Rep. Frank Pallone Jr. (D-6th Dist.) introduced a bill last month in Congress that would designate a stamp dedicated to Crohn's disease.
"I think there's a lack of awareness for Crohn's disease. If we're asking for more money for research, it (the stamp) helps in that effort," Pallone said.
Sofer, 24, said he got the idea of a Crohn's stamp shortly after he was diagnosed at age 12. He was inspired by other awareness stamps, such as breast cancer and HIV. He said there are about 50,000 requests for stamps a year and the Citizen Stamp Advisory Committee, which makes recommendations for commemorative stamps, honors only 20 to 25 annually.
But he's optimistic.
"I'm up for the challenge, and I'm certainly not backing down," Sofer said.
Pallone said, "Gideon has refused to let this disease stop him from reaching his goal and has strived to improve the lives of the millions ofothers affected by Crohn's."
Sofer said a Crohn's stamp would bring so much awareness to the disease. He pointed to Alzheimer's disease as an example. An Alzheimer's stamp is expected out next month, but the postmaster general approved the stamp eight months ago, he said. Since that time, celebrities have spoken about the fatal brain disorder and a biohealth conference on Alzheimer's was held in June in Chicago.
"There's an overwhelming pattern. Everyone doesn't attribute it to the stamp, but once the postmaster decides to shine light on a cause, it sets the agenda," he said.
Rosemarie Golombos, executive director of the New Jersey Chapter of the Crohn's & Colitis Foundation of America, which is working on finding a cure for both conditions, said the stamp would be a boost to the foundation's cause.
"Efforts by U.S. Rep. Frank Pallone Jr. to issue a commemorative postage stamp devoted to this cause will build on the foundation's efforts to increase awareness about these diseases and help those suffering," Golombos said.
Sofer said more needs to be done for early detection. He was on his death bed before doctors figured out he had Crohn's. His weight dropped from about 80 to 45 pounds. Part of his intestines had shrunk to the size of a pin hole.
"It hurt to swallow water," he said.
Sofer, who's studying policy and public health at the University of California in Berkeley, said the symptoms may be treated, but there's no cure. Some of the symptoms include persistent diarrhea, abdominal pain, fever and rectal bleeding.
Sofer, who graduated from Highland Park High School in 2003 and moved to California the next year, has half his intestines and receives electrolytes through an IV every day to help with dehydration.
"I'm going to (Capitol) Hill, and I have a pack on my back," he said of the IV. Sofer is spending the summer in Washington, D.C., working to get support for the stamp.
"I'm not out of the woods yet. I have plenty to be grateful for, but this lifestyle takes some getting used to," he said.
