From the Archives: Spring 2006 Lupus Now magazine
In Memory of Henrietta Aladjem -- Her Suffering Became Beacon for Lupus Patients
by Gloria Negri, Boston Globe Staff
Henrietta Aladjem first experienced symptoms of systemic lupus erythematosus in 1953, when relatively little was known about the potentially devastating immune system disease.
"I was given one year to live," she told the Columbus (Ohio) Dispatch in 1999. "At the time, if you didn't die within four years, they questioned your diagnosis."
Mrs. Aladjem, whose longtime advocacy on behalf of others with the disease earned her the sobriquet, "Mother Lupus," died October 30 at Mt. Auburn Hospital in Cambridge of a stroke. She was 88 and lived in Watertown.
Dr. Peter H. Schur, senior physician and director of lupus research at Brigham and Women's Hospital, who had treated Mrs. Aladjem since 1967, said she had been in remission from lupus for 30 years. "I used to joke with her," he said, "and attribute it to her good Bulgarian blood."
In the 1970s, Mrs. Aladjem and Schur co-founded the Lupus Foundation of Massachusetts and subsequently helped found the Lupus Foundation of America, Inc. in Washington, D.C. In 1988, they collaborated on a book, In Search of the Sun, a title that refers to the adverse effect the sun has on lupus patients.
Mrs. Aladjem became an advocate for other lupus sufferers soon after she found out she had it. In her 1972 book, The Sun Is My Enemy, she talks about the onset of the illness and her struggle to get a diagnosis. Through her many years living with lupus, she hoped that her books, newsletters, and speaking engagements would help others.
"Doctors knew very little about lupus at the time," Mrs. Aladjem's son, Albert of Cambridge, said. "And there was no literature. Mother became determined to learn as much as she could about the disease and became self-taught, and then she wanted to make the information available to others."
With her charismatic presence and in her Bulgarian accent -- she never minded being described by friends as "a cross between Zsa Zsa Gabor and Mother Teresa" -- Mrs. Aladjem spoke before government, medical, and private forums to raise funds for lupus research and consciousness about the disease. Her self-taught knowledge was considered so vast she was invited to go on rounds with doctors at hospitals.
"Hennie was fighting for patients' rights even before the phrase was used," said Vicki Croke of Newton, a friend of 33 years. "She pulled lupus out of the shadows. She was really a strong-willed human being, and nothing got in her way of getting lupus to the forefront."
When Mrs. Aladjem's knowledge of the disease that threatened her life became known in the medical community, she was much in demand as a spokeswoman.
"Henrietta was very sophisticated about pertinent medical facts about lupus," said Dr. Sheldon Cohen, former head of the allergy and immunological institute at the National Institutes of Health in Bethesda, Md. "She was a very persuasive woman."
She developed a publication called Lupus News, which she put together at her home, he said.
Mrs. Aladjem continued to raise funds for lupus patients well into her later years. "Hennie could raise money on a dime," said Elyse Smith, president of the Lupus Foundation of New England. "She was a practical joker, someone who could make a roomful of physicians laugh out loud but at the same time be taken very seriously by them."
Mrs. Aladjem was honored by both Presidents Carter and Reagan for her work on lupus. Yet she treasured just as much, friends said, the many letters from lupus sufferers around the world thanking "Mother Lupus" for her compassionate support. "She was on the phone morning to night helping patients," Croke said.
"Hennie was indeed the patient's best friend," said Barbara Feinberg of Newton, whose daughter died of lupus 10 years ago. "Someone would call her in the middle of the night, and she would meet them at the hospital. During the years, I could see my daughter's closeness to Hennie grow. She would tell Hennie things she wouldn't tell me."
When Mrs. Aladjem left the Lupus Foundation of America, she brought her expertise to the University of Massachusetts Medical School in Worcester, where she and Dr. Robert Zurier, chief of rheumatology, put out the newsletter Lupus World.
"Henrietta was a politician in the best sense of the word," Zurier said, discussing her ability to get the word out about lupus. "Her impact was huge in educating both patients and physicians."
Mrs. Aladjem was born in Bulgaria and did not speak English until she came to this country at age 24, according to poet David McCord in his introduction to The Sun Is My Enemy. She left her home and parents in Sofia in 1941. "Besides her personal belongings, she carried a bag containing 52 books," he wrote. "She was always a reader."
After arriving here, she married Albert Aladjem, a wool merchant, who predeceased her. They lived in West Newton.
In The Sun is My Enemy, Mrs. Aladjem recalled the arrival of her first symptoms of lupus.
After consulting with doctors here and abroad, Dr. Frank Gardner of Peter Bent Brigham Hospital diagnosed the illness. The hospital is now Brigham and Women's.
"I knew if Henrietta could read Bulgarian, she could read Russian," Gardner, now at the University of Texas Medical Branch in Galveston, recalled. He sent her back to the stacks at Widener Library in Cambridge to find literature and scientific information about lupus written in Russian. She found helpful facts about therapy and went to France to meet the doctor who had discovered them, Gardner said. "When Henrietta was on to something, she was like a bulldog."
Mrs. Aladjem remained connected to the Lupus Foundation of New England until about a year ago, Smith, its president, said. "Henrietta's biggest hope was to live to see the day when there would be life without lupus."
Published November 17, 2005. (c) Copyright 2005 The New York Times Company. Reprinted with permission.