Support group for rare disease now has N.J. chapter

Ankylosing spondylitis
limits mobility, may
cause spine to fuse

Staff Writer

Support group for rare disease now has N.J. chapter

VERONICA YANKOWSKI staff Howard Feingold of Marlboro has a rare disease called ankylosing spondylitis and has started a support group for      people who are waging the same battle he is.VERONICA YANKOWSKI staff Howard Feingold of Marlboro has a rare disease called ankylosing spondylitis and has started a support group for people who are waging the same battle he is.

Ankylosing spondylitis

limits mobility, may

cause spine to fuse


Staff Writer

Howard Feingold, who suffers from a rare disease — ankylosing spondylitis (AS) — is filling a void by starting the first support group for the disease in the New York-New Jersey area. Feingold, 50, a Marlboro resident, hopes the group will be able to educate medical professionals and physical therapists about the sickness, which he said is often undiagnosed, misdiagnosed and mistreated.

Approximately 350,000 people — or one-third of 1 percent of Americans — have been diagnosed with the disease, which causes discs and joints to become inflamed and, in some cases, fused. AS, the most commonly overlooked cause of persistent back pain in young adults, can also trigger many seemingly unrelated problems in the body, Feingold said. As a result of the insidious nature of the disease, which is camouflaged by a confusing, multifaceted array of ailments and symptoms, many people with AS are not diagnosed correctly, Feingold stated.

AS patients almost always have at least four of the following characteristics and symptoms during the initial stages of the disease, Feingold explained:

• The patients are younger than 35.

• Their back pain and stiffness gradually worsens over a period of several weeks.

• Back pain and stiffness lasts longer than three months and does not occur in sudden attacks.

• Pain and stiffness of the spine in the morning.

• Pain improves with exercise and activity during the day, and worsens with rest and sleep.

These identifying factors can help patients and doctors to differentiate AS from other disorders and illnesses, Feingold said.

Due to AS’s many symptoms and effects, which affect areas covered by many different types of doctors, the disease is very difficult to diagnose, Feingold said.

"You can go to an orthopedist, a rheumatologist, a gastroenterologist, an ophthalmologist or a podiatrist, and they’ll all offer a different diagnosis because they’re focusing on the area of their specialties," he said.

There is no cure for AS. The current treatment for the disease consists of anti-inflammatory inhibitors and exercise, Feingold said. A new drug recently approved by the U.S. Food and Drug Administration — Enbrel — seems to slow the disease, he said.

If AS, which progresses gradually, is not properly treated for a number of years, it can cause calcified joints and nearby bones to become brittle and easily broken. The posteriors of people with advanced AS can become completely bent over and they cannot stand, sit or walk for long periods of time.

"I don’t know what the illness will do next — it’s done a lot of weird things to my body," Feingold said.

If AS is detected in its early stages, medicine and exercise therapy can keep the disease in check, preventing the spine from fusing and stopping the other complications from occurring, he explained.

The California-based Spondylitis Association of America (SAA) helped Feingold start a support group by sending a mailing to people within a 40-mile radius of Marlboro, informing them about the new group. Fourteen people came to one of the group’s first two meetings.

The new support group members will take a variety of steps to help each other cope with the disease. Working with rheumatologists, primary care doctors and training hospitals, the group members will attempt to inform as many AS patients as possible about the organization by raising awareness of its existence throughout the state, Feingold said. The group members would like doctors to inform their patients with AS about the organization, Feingold said. Eventually, Feingold believes additional AS support groups will be established in other locations in the state.

Feingold would like to see the members of the new support group give each other physical therapy and hydrotherapy — therapy that takes place in water — under the supervision of physical therapists. Psychologists, rheumatologists and other professionals will be asked to speak to the group, he said.

Another goal of the new support group will be to ensure that doctors, physical therapists and medical students become more knowledgeable about the disease. Feingold hopes to set up educational programs with associations of primary care physicians and rheumatologists, as well as with training hospitals.

"If none of the professionals see what this [disease] can do outside of their specialty, how will they know they’re looking at AS?" Feingold asked.

Feingold, who was diagnosed with AS 16 years after the onset of symptoms of the disease, now has an advanced case of AS. In 1981, he began experiencing lower back pain. Over the next nine years he went to several doctors in a variety of fields, but none was able to stop his pain or his intensifying immobility.

In 1990, one of the top orthopedic surgeons in New Jersey found a bone spur in Feingold’s neck and performed an operation in which the bone spur was supposed to be removed. The doctor was not able to completely remove the bone spur and later Feingold found out the doctor had written the word "spondylitis" in his post-surgery report, but did not testing for AS.

In 1997, Feingold’s whole body became very stiff and his posture became bent. His hips and feet hurt. He went to a podiatrist, who discovered that Feingold had lost sensation in his feet and had bone spurs in his toes and heels.

Feingold then went to see an orthopedist, where an X-ray technician was puzzled by what she observed.

The technician "thought something was wrong with the machine, and took another set. She said she didn’t know what to make of the X-rays and called in the doctor," Feingold remembered.

The doctor said there was nothing wrong with the X-rays and told Feingold his entire spine had fused. Feingold was also told that he had an advanced case of AS.

In the six years since, Feingold said, he has experienced a variety of difficulties that have been directly or indirectly caused by AS. His bowels have been obstructed and he has had problems with his eyes. He has had neurological problems in both of his legs and at one point earlier this year his left foot, right ankle and right wrist were all in casts at the same time.

Feingold’s posture has been affected — as a result of the disease he is now hunched over, but through sheer will power he has prevented himself from becoming entirely bent.

"My body was telling me it would be more comfortable to give in and bend completely, but I’ve fought it. If not, I’d be extremely bent over," said Feingold, who had to stop working in retail operations management earlier this year and recently went on permanent disability.

Golf has become a form of therapy for Feingold, who cannot walk, sit or stand for long periods of time. Playing the game has helped him deal with AS, which actually gives him an advantage in the sport.

"Since I can’t lift or turn my head, I don’t follow the ball as I take my swing. My eyes are focused on the ball at all times and almost everything I hit goes straight out. I have the most fun seeing how competitive I am with active people," he said.

Feingold is hoping the new support group will be able to spread the word about the disease, enabling those people with AS to be diagnosed early, keeping AS in check and stopping its progression.

"I certainly don’t want people to endure what I have had to endure — there’s no reason for it," he said.

For more information about AS, visit the SAA’s Internet Web site

Anyone who is interested in joining Feingold’s support group or in helping with its development should send an e-mail to him at or call him at (908) 415-2250.