Support group growing,
aims to educate doctors
Area residents who have
ankylosing spondylitis
shed light on condition
BY LARRY RAMER
Staff Writer

Howard Feingold

Howard Feingold’s efforts to spread awareness about his rare disease are beginning to bear fruit.

Feingold has ankylosing spondylitis (AS), which causes discs and joints to become inflamed and in some cases, fused. The disease also causes problems in many other parts of the body.

In October, Feingold, 51, a Marlboro resident, formed the first support group for AS in the New York-New Jersey area. The group has grown from 12 members at its founding to about 45 members now, Feingold reported.

One of Feingold’s goals in starting the group was to educate medical professionals about AS, which he said is often undiagnosed, misdiagnosed and mistreated. In fact, the disease, which has been diagnosed in about 350,000 Americans, or 0.67 percent of the nation’s population, is one of the most commonly overlooked causes of persistent back pain in young adults.

One reason the disease may be misdiagnosed is because AS’s symptoms affect areas normally covered by five different types of doctors, Feingold said. In Europe, AS has been diagnosed in 1 to 5 percent of the population, he added.

Feingold decided it would be most effective to build awareness about AS among medical students and medical school professionals.

"In the short term, we can only hope to educate new doctors, since older doctors do not undergo formal continuing education," he said, noting that he wrote to several prominent medical schools and organizations, describing AS and his support group.

Writing on behalf of the members of his support group, Feingold said the group members would be willing to help educate medical students about AS by demonstrating their bodies for the students. He asked the medical school administrators to provide expert therapy to the members of the AS support group and to allow AS support group members to use the schools’ therapeutic facilities. Feingold asked the medical schools to provide guest speakers on topics of interest to the group members.

Several institutions have responded favorably, he said. The University of Medicine and Dentistry of New Jersey (UMDNJ) is examining the possibility of developing a partnership with the members of the New York-New Jersey AS support group, according to a letter sent to Feingold. Senior officials of the American Medical Association (AMA) referred Feingold to the heads of 10 training hospitals in New York, New Jersey and Philadelphia. Feingold said the managers of some of these hospitals are examining his proposals.

An AMA official, Debra Berth-Mallek, agreed to invite Feingold’s group to speak before medical school student chapters, Feingold said. The president of the American College of Rheumatology, Dr. David Wofsy, wrote that he is considering Feingold’s request for a partnership.

Feingold said one of his key aims in founding the organization is in the process of being accomplished.

"We’re getting the word out about AS," he said. "By building awareness and broadening the knowledge of doctors about the disease, we will prevent misdi­agnosis of AS patients in the future."

Many patients with AS are misdiag­nosed in their teens or 20’s, Feingold ex­plained. If doctors are able to succesfully detect the disease at its earliest stages, they will be able to prevent the worst ef­fects of the illness from occurring, he said.

"If young patients are treated with mild anti-inflammatory drugs and physi­cal therapy and regular exercise, they will never get to the point where there’s crazy inflammation or fusing of the joints," he said.

Meanwhile, Feingold’s group has com­pletely changed the lives of two people, he reported. One man had not heard of Enbrel, a new drug for AS patients that inhibits the molecule causing the disease.

Members of the support group told the man about Enbrel and the drug helped him immensely, Feingold said.

"The drug did wonders for him. It’s like night and day," he said. "He was in great discomfort and was suffering from hip pain, bad inflammation and fatigue. He felt a positive change after a week on the drug."

A woman who attended a few meetings of the group thought she had AS, but the group members told her to see a rheuma­tologist, which she had never done, Feingold said. The rheumatologist real­ized she had a thyroid problem and pre­scribed appropriate medication. The woman felt better almost immediately, Feingold said.

Feingold’s support group has five members from Marlboro, three members from Howell, two from Freehold and two from Jackson. The towns with one sup­port group member each include East Brunswick, North Brunswick, Old Bridge, Middletown, Keyport, Homldel, Millstone Township, Oceanport and Metuchen, Feingold said.

Anyone who is interested in joining Feingold’s AS support group or in helping with its development may send an e-mail to him at ankspond_nj@yahoo.com, or call him at (908) 415-2250.