For 13 years, Margaret A. Hill blamed the weakness in her legs on age. She couldn't walk from her house to the end of block and back and needed a wheelchair when she shopped at a mall.
Then, in 1989, Mrs. Hill learned she had adhesive arachnoiditis, a rare, incurable spinal disease.
Nothing, however, prepared the 52-year-old Pasadena resident for her futile two-year search for information about the disease.
"I couldn't find help anywhere," Mrs. Hill said. "I thought, 'My God, back pain is so common and there's nowhere for people to go.' "
Frustrated by the lack of resources in local libraries and physicians' offices, Mrs. Hill founded the Back Pain Association of America, a nonprofit referral service that puts people with major back problems in touch with specialists for advice or treatment.
More than 7 million new cases of back pain are reported each year, Mrs. Hill said. About $50 billion is spent on people who suffer from back pain, she said.
Mrs. Hill said she contracted adhesive arachnoiditis from a fluid injected into her spinal cord during an operation in January 1976 for a herniated disc. The disease, an inflammation of the arachnoid membrane, can kill nerve roots in the spine. Symptoms include bladder or bowel dysfunction, weakness in the legs and seizures.
Mrs. Hill scoured libraries and medical groups before finding the information she needed at the National Institutes of Health. But the time wasted in the search bothered her. "I thought to myself, 'There must be other people like me who need someone to talk to.' "
Since the group's founding in 1991, more than 2,000 people have called.
Besides Mrs. Hill, the group has a nine-member board of directors and five staff workers, all volunteers. Mrs. Hill said she mails about six information packets a day to people who call.
Don Wood of Nanitowish, Wis., found help through Mrs. Hill.
"I was at the end of my rope," said Mr. Wood, 28, who was diagnosed in April 1994 with spina bifida occulta, a birth defect that leaves an opening between two vertebrae in the spine. "So I called her up and she helped me out a lot. She got me the information I needed, and she helped me with doctor referrals. She motivated me to fight this."
The association's reputation has grown. It was one of six co-sponsors of the American Academy of Pain Management conference in Dallas last month.
Mrs. Hill, who uses a cane to walk and still needs a wheelchair for longer distances, said she would like a Back Pain Association of America office in every state. That is why she has a handbook for starting other branches.
"I want to let people know that we're here for them," she said. "I want to let them know that if they need us, give us a call."
For information on the association, call (410) 255-3633.