Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, November 30, 1993 TAG: 9311300174
SECTION: VIRGINIA PAGE: A-1 EDITION: METRO
SOURCE: CAROLYN CLICK STAFF WRITER
DATELINE: LENGTH: Long
They work in the same office and share the same strange, debilitating disease, but there the similarities end.
That is what is disconcerting to researchers and frightening to victims of sarcoidosis - the disease is so personal, so individual that each patient believes they suffer a set of symptoms all their own.
It can wreak havoc on one person's lungs and ravage the central nervous system of another. One may suffer rashes and skin breakouts while another will have no skin problems at all. Some people who have sarcoidosis have such mild cases, they do not even know they have the disease.
For Lorraine Eisner, the symptoms began with a chronic, strangling cough and an overwhelming feeling of tiredness. She thought she had tuberculosis; her daughter was convinced she was dying of cancer.
For Chrystella Hairston, the first real outbreak of the disease showed up on her face, in bumpy lesions that marred an otherwise flawless complexion. She went to a dermatologist, who diagnosed acne and treated her with Retin A.
She developed a bellowing, hollow cough that frightened her co-workers at the Virginia Department of Transportation in Salem because "it sounded like two other people inside echoing out." Finally, a second dermatologist recognized the symptoms of sarcoidosis.
Now, thinking back, she believes she has carried the disease for five years or more. Already, both women have suffered permanent lung damage because of the scarring nature of the disease.
There is no known cause or cure for sarcoidosis, an inflammatory disease that doctors believe may be triggered by a virus or abnormal immune response. Two dermatologists, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway, identified sarcoidosis more than 100 years ago. It originally was known as Hutchinson's disease or Boeck's disease.
The National Heart, Lung and Blood Institute estimates that 60 percent to 70 percent of sarcoidosis cases are brief and heal by themselves. In 20 percent to 30 percent of the cases, patients suffer permanent lung damage. In 5 to 10 percent of the cases, the formation of granuolomas or fibrosis in vital organs is so severe, the disease can be fatal.
The disease, known as sarcoid for short, generally targets people between the ages of 20 and 40, but again, that is not an absolute. Eisner is 53 and Hairston is 45. Although the disease is found among all races throughout the world, it is most common among American blacks and northern European whites, particularly Scandinavians.
Symptoms can include persistent cough, fever, night sweats, shortness of breath, stiff neck, rapid heart beat, abdominal pain, blurred vision, swollen legs and ankles and enlarged organs. But because the symptoms come and go, doctors often mistake them for signs of other diseases.
Sandra Conroy, a New Jersey woman diagnosed with sarcoidosis 10 years ago, found information about the disease so sketchy she founded the National Sarcoidois Resource Center in 1992. She also has written a resource guide and maintains a data base of about 5,000 Americans who suffer from the disease.
"It's such a difficult disease and there are millions of people who suffer from it," Conroy said.
Often, she said, "what is written in the literature and what people are saying are two different things."
While the disease runs its course and disappears in many patients, "what I was finding was there are multiple symptoms and it doesn't go away."
Dr. Nelson Greene, a pulmonary specialist at the Lewis-Gale Clinic first saw sarcoidosis while in medical school and later treated many sarcoid patients while on fellowship in Cincinnati.
"The doctor and the patient need to know what they are dealing with," Greene said. The disease mimics others, including tuberculosis, but there are ways of determining if it is sarcoid. Sometimes, he said, a simple chest X-ray during a routine physical examination will pick up the presence of sarcoid.
Pathologists can also spot the disease through biopsy because of "a certain configuration of the cells," Greene said.
Between 5 percent and 10 percent of his patients have sarcoidosis in varying stages of severity.
"The patient will have to understand there are going to be good days and bad days," Greene said.
For many, the symptoms will simply disappear in several years. But others, Conroy said, are dogged by a lifetime of symptoms.
"There are many people who are fine but there are thousands and thousands of people who are not, and that is where the focus should be," she said.
There is no specific treatment for the disease, although some patients with lung involvement have responded well to corticosteroids, with prednisone being the most commonly prescribed.
Unlike more well-known diseases such as cancer and AIDS, sarcoidosis receives little publicity and that makes people like Hairston and Eisner feel isolated and alone. They would like to form a support group but are not sure how many people in the Roanoke Valley area are sarcoidosis sufferers.
"There is no cure for it, but you could at least have a shoulder to cry on," Hairston said.
The Roanoke chapter of the American Lung Association has a support group for lung disease sufferers but nothing devoted strictly to sarcoidosis, said Connie Bierly. The lung disease group has been inactive for some time because of lack of participation.
"We would be willing to work with them if they want to form one," she said. If interested in such a support group, sarcoidosis patients and their families may contact the Lung Association at (703) 362-5864.
Because of her growing database, Conroy said she can also assist in getting patients and families within a geographic area together.
"If there is not enough people in the area, develop a simple flier and take it to pulmonary clinics," she said. "Let them be aware you are starting the support group.
People may obtain information on the disease by writing the National Sarcoidosis Resource Center, P.O. Box 1593, Piscataway, N.J. 08855-1593. An individual or family may join the group for a $25 membership fee, entitling members to education and service programs, a newsletter, networking and the center's database.
Information on current sarcoidosis research also may be obtained by writing the National Heart, Lung and Blood Institute, Division of Lung Services, 5333 Westbard Ave., Room 6A16, Bethesda, Md. 20892.
by CNB